Confused: I was diagnosed with interactive... - Thyroid UK

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Confused

fizzybee profile image
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I was diagnosed with interactive thyroid 6 ish years ago , I have been told I am with in normal range but I don't feel any better I am tired can't stand warm weather which never used to bother me I am literary dripping with sweat just get dressed. My weight is out of control which I always managed, my joints ache . I have lost muscle tone ,brittle finger nails and thinning hair.I don't know if all this adds up to depression or the disease causes it. I am about to ask for my lastest results and considering a private test and search out a private endocrinologist ,any recommend someone in the East Midlands . What should I be looking for I have tried to educate myself but it just confused me. I was sent to a nhs endocrinologist but was dismissed as a middle aged women who was just bothered about my weight gain...oh I also have started with water retention again. Any advice would be welcome.

Karen

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fizzybee profile image
fizzybee
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SeasideSusie profile image
SeasideSusieRemembering

fizxybee

The first thing to do, before anything else, is obtain your test results from your surgery. If in England you may have online access, if not ask if your surgery offers this. If not then ask the receptionist (not the doctor) for a print out of your test results. Then post them on the forum, along with their reference ranges (these are essential as ranges vary from lab to lab and they will be on the print out) so that members can comment.

For a full picture we need to see

TSH

FT4

FT3

Thyroid antibodies

and because thyroid hormone needs optimal nutrient levels to work properly it's also important to test

Vit D

B12

Folate

Ferritin

If you haven't had all these done, you can ask your GP to do them although he may not be able to get them all done - certainly you probably wont get FT3 done and maybe not all the nutrients. In this case we have recommended private labs which offer a test bundle which includes all those above and it can be done by fingerprick or, for extra charge, venous blood draw can be arranged.

Once we see these results we will be able to help you further.

If you want to do a private test the following are the most popular here:

Medichecks ADVANCED THYROID FUNCTION medichecks.com/products/adv...

Check this page for details of any discounts: thyroiduk.org/getting-a-dia...

or

Blue Horizon Thyroid PREMIUM GOLD bluehorizonbloodtests.co.uk...

Check this page for discount code thyroiduk.org/getting-a-dia...

Both tests include the full thyroid and vitamin panel. They are basically the same test with just a few small differences:

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.

Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.

If you decide to do one of these and want to do the fingerprick test I have some tips that may be helpful which I will post for you if you so wish.

fizzybee profile image
fizzybee in reply to SeasideSusie

Thank you I will take your advice and start with a private test, the tips for the fingerprick would be welcome regardless of which way I do it .

SeasideSusie profile image
SeasideSusieRemembering in reply to fizzybee

Here you are 😊

TIPS FOR DOING FINGERPRICK TEST

* Be well hydrated, drink plenty of water the day before, and before you do the test.

* Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style.

* Have a bowl full of hot water, dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again.

* Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf. One member uses an ironing board so she can get the perfect height.

* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. I use my ring finger, but middle finger is next best for me.

* Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable

I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this is what I did

* Prick my finger as usual, at the same time try and make a very slight twist with the lancet (the blade retracts very quickly so you have like a nano second to twist the lancet). I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes.

If you supplement with Biotin, or a B complex containing it (B7), leave it off for 7 days before doing any blood tests as it can give false results when biotin is used in the testing procedure, and most labs do use it.

Video showing how to do a fingerprick test:

youtube.com/watch?v=w2JzToZ...

fizzybee profile image
fizzybee in reply to SeasideSusie

Wow glad I asked thank you

fizzybee profile image
fizzybee in reply to SeasideSusie

Hi I have just received my last blood results from my G P it reads Tsh level (XaELV) 0.83mu/l ( 0.4 . 55 )

I have now booked a private blood test from one of your recommendation.

SeasideSusie profile image
SeasideSusieRemembering in reply to fizzybee

Come back with results when you have them, I wouldn't be surprised if your FT4, or more possibly FT3, show low in range.

When returning your sample, do the test and post same day Monday-Wednesday. The return envelope will have a Tracked 24 label but that doesn't guarantee it will arrive next day. It often takes 2 days even from a Priority Post Box and sometimes longer. I always go to the post office counter and pay extra for Special Delivery Guaranteed Next Day by 1pm, if that does arrive late you can claim your fee back as long as you have your receipt with tracking number. It usually arrives the next day but I have had a couple of occasions when it's taken 2 days.

fizzybee profile image
fizzybee in reply to SeasideSusie

Thank you for the advice

fizzybee profile image
fizzybee in reply to SeasideSusie

Hi I now have blood results , feel a little concerned about the CRP HS level being towards the higher end as I am almost in constant pain.

CRP HS 4.2

Ferritn 80

Folate Serum 3.4

Vit B12 Active 89

Vit D 74

TSH 0.65

Ft3 4.3

Free Thyroxine 18.5

Thyroglobulin 487

Thyroid Peroxidase Antibodies 33

The blood was taken before taking any meds, I had not taken any pain relief for over 7 days which I limit any way these are for fibromyalgia of 20years.

I feel dreadful most of the time my weight is not helping , I have maintained my size 10/12 with exercise and diet for all of my adult life until 6 years ago now I am size 20. I don't know if the low mood is because I don't recognise myself anymore is physical or physiological . This extra weight cause more joint pain I don't know where fibromyalgia meets thyroid symptoms. Any advice you may have would be appreciated

Karen

SeasideSusie profile image
SeasideSusieRemembering in reply to fizzybee

Fizxybee

I think this is probably a Medichecks test, we always need reference ranges along with the results as these vary from lab to lab, but I do know Medichecks ranges so I will put them in so that anyone else who wants to comment will know them.

CRP HS 4.2 (<5)

This is an inflammation marker as you probably know and obviously the lower the result the better. Maybe not as bad as it might be considering the fibromyalgia.

**

Ferritn 80 (13-150)

This result doesn't look to bad but as ferritin can be an inflammation marker this may be higher than normal.

**

Folate Serum 3.4 (2.9-14.5)

This is low. Folate below 3 is folate deficiency so your is just above this. Folate is recommended to be at least half way through range which is 9+ with that range. See B12 below.

**

Vit B12 Active 89 (25.1-165)

Active B12 below 70 suggests B12 deficiency. Yours is a fair way above this and isn't too bad at all but I prefer mine to be over 100.

As your Folate is low, if these were my results I'd be supplementing with a good quality, bioavailable B Complex containing methylfolate (which should raise your folate level) and methylcobalamin (which should improve your B12 level). My preferred brand is Thorne Basic B. Vit C should be kept 2 hours away from B12 so if you choose a different brand do check that it doesn't contain Vit C.

**

Vit D 74nmol/L

This is within the range for the "sufficient" category. However, 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 3,000iu D3 daily.

Retest after 3 months.

Once you've reached the recommended level then a maintenance dose will be needed 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. This can be done 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 Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.

For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

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.

**

TSH 0.65 (0.27-4.20)

Ft3 4.3 (3.1-6.8)

Free Thyroxine 18.5 (12-22)

As you have been diagnosed with an underactive thyroid I am assuming that you are prescribed Levo. How much do you take?

The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges.

Your TSH is in a good place, your FT4 is 65% through range and your FT3 is only 32% through range. This suggests poor conversion of T4 to T3 and it's low T3 that causes symptoms.

Good conversion requires optimal nutrient levels, yours aren't optimal but they're not dire. Conversion may improve when you've improved your levels and, of course, we don't know if your ferritin level is a true level as it may be raised due to inflammation. Some experts say that ferritin needs to be 90-110 for optimal thyroid function.

**

Thyroglobulin 487 (<115)

Thyroid Peroxidase Antibodies 33 (<34)

Raised thyroid antibodies suggest autoimmune thyroid disease, known to patients as Hashimoto's.

Your Thyroid Peroxidase (TPO) antibodies are at the very top and one point more would confirm Hashi's. Thyroglobulin (Tg) antibodies can be raised in Hashi's but can be raised for other reasons. The NHS does tend to only accept raised TPO antibodies to confirm Hashi's.

Antibody levels fluctuate and another test might show them higher or lower. I very much expect you would see higher TPO antibodies at some point. I don't doubt that you have 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 I expect this could be why your nutrient levels aren't optimal.

SlowDragon has information and links about gut issues and I'm sure she'll pop along and add these when she's around.

fizzybee profile image
fizzybee in reply to SeasideSusie

Thank you you are correct it is a Medicheck I can give the rest of the numbers ifnecessary but you seem to understand perfectly well. I take Levo 100 correctly after reading these posts. I will get the supplements you suggested is this to help with the T3 levels of should I try another conversation with my GP . I realise it is slow process and maybe I want to run before I can walk but would it be worth seeing a private endocrinologist. Sorry if your getting messages from different ways but I am a tech dinosaur.

Karen

SeasideSusie profile image
SeasideSusieRemembering in reply to fizzybee

fizxybee

You could ask your GP if he will allow a trial of an increase in Levo, he may not be willing but point out that your FT4 isn't that much over half way through range and your FT3 is very low in range, and that an increase in dose may help raise your FT3 level. You could use the following to support your request:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication 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.

Optimising your nutrient levels may help with better conversion and you could try the selenium as that might too.

I would hold back on seeing a private endocrinologist, many stick to the NHS way of thinking although there are some thyroid friendly ones out there but I would suggest you ask for a recommendation first. Get all your ducks in a row first, maybe give it 3-4 months to see if optimising your nutrient levels help and, if you can get an increase in Levo from your GP then see how that affects your levels too.

You can send for the list of thyroid friendly endos from Dionne at ThyroidUK:

tukadmin@thyroiduk.org

Before deciding to see one and making an appointment, ask on the forum if anyone has any feedback on any that you are interested in. We can name doctors on the forum to ask for feedback but information must be sent in a private message as we can't discuss individual doctors on the forum.

SlowDragon profile image
SlowDragonAdministrator

TSH 0.65

Ft3 4.3

Free Thyroxine 18.5

Ft4 is 65% through range

Ft3 is only 32% through range

Like many people with Hashimoto’s you have poor conversion

First step is to get vitamins optimal and trialing strictly gluten free diet

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 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 coeliac 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.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

Most people when adequately treated will need Ft3 at least 60% through range

Retest thyroid levels in 2-3 months…..if Ft3 remains low you will need small doses of T3 prescribed alongside levothyroxine

fizzybee profile image
fizzybee in reply to SlowDragon

Wow need to read that a few more times ,but have understood the gluten free , thank you I will try it along with the supplements I have just ordered. Head spinning lol

SlowDragon profile image
SlowDragonAdministrator

Strongly recommend getting thyroid and vitamin levels retested BEFORE booking consultation

Did you get dose increase in levothyroxine

How’s strictly gluten free diet going

Essential to get all four vitamins optimal

Approx how much do you weigh in kilo

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Guidelines on dose by weight is approx 1.6mcg levothyroxine per kilo

fizzybee profile image
fizzybee in reply to SlowDragon

Thank you . Yes I did get an increase of levothyroxine up by 25 from 100 . I am currently weighing 117 I maintained 69 for years and I am 5" 10. The gluten free has made no difference . I purchased all the vitamins recommend and not sure which ones made me feel less tired so maybe the full combination did the trick. Mostly get the same brand but not always , when I spoke to the pharmacy about it I may have been speaking Mandarin. I have my bloods taken again early October with my GP I will also repeat the Medicheck one . I just want all my ducks in a row my GP just doesn't listen and because it is a phone appointment I can't get a word in. They seem unwilling to take the weight gain seriously and it effects everything not just my appearance. Maths is not my strong point but I will try and work out the equation you gave me 😂

SlowDragon profile image
SlowDragonAdministrator in reply to fizzybee

117 kilo?

117 x 1.6mcg = 187mcg

So 125mcg is likely still not high enough dose

Which brand of levothyroxine do you normally prefer

Print this out for pharmacy

gov.uk/drug-safety-update/l...

fizzybee profile image
fizzybee in reply to SlowDragon

Wow I got my maths right ,does this mean I have to try and get my GP to increase it to almost 200 mcg she will have a heart attack. The brand usually dispensed is Teva UK / Pliva Croatia. Sorry to be a nuisance but I think I sent you a message about fizxybee I am not good with technology if that is also my email address I have put it in wrong !!!??? . I think the penny has dropped regarding email 🤔

SlowDragon profile image
SlowDragonAdministrator in reply to fizzybee

Dose levothyroxine is increased SLOWLY upwards in 25mcg steps until symptoms improve and Ft4 and Ft3 are at good levels

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more …..some less

healthunlocked.com/thyroidu...

Are you lactose intolerant that you normally request Teva brand?

fizzybee profile image
fizzybee in reply to SlowDragon

No I am not lactose intolerant this is just the brand I was given I didn't know I had a choice it is all so confusing.

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