Blood tests- what is required??: I paid to get... - Thyroid UK

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Blood tests- what is required??

Magsb80 profile image
36 Replies

I paid to get these results as my Dr only tests for TSH & T4. Now on 100mg of Levo and still exhausted.

Saw the Endo and he is saying I’m ‘within range’.

Help! How can I feel like this and keep being told ‘I’m within range!’

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Magsb80 profile image
Magsb80
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36 Replies
SeasideSusie profile image
SeasideSusieRemembering

Magsb80

Are those results from testing whilst on 100mcg Levo?

The aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges. You are undermedicated with those results.

Did you manage to get the Pulse article to take to your appointment?

Magsb80 profile image
Magsb80 in reply toSeasideSusie

Hi Susie, he was not interested in anything I had to say so the article would have been pointless. No, these are old tests but my TSH has increased since the Levo has been increased

SeasideSusie profile image
SeasideSusieRemembering in reply toMagsb80

Mags

What are the test results that the endo is basing his opinion on?

Magsb80 profile image
Magsb80 in reply toSeasideSusie

I don’t have them to hand but my TSH WAS 5.65 (can’t remener T4)

SeasideSusie profile image
SeasideSusieRemembering in reply toMagsb80

Mags

If you have those results, and the TSH is over range then you should ditch this endo, show the results to your GP along with the Pulse article and the following

pathology.leedsth.nhs.uk/pa...

Scroll down to

"Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .... This Indicates

0.2 - 2.0 miu/L .... Sufficient Replacement

> 2.0 miu/L.... Likely under Replacement"

You don't necessarily need an endo, many of us have never seen one, or seen only once.

If your GP is as unhelpful as your endo, then it's time to find another GP.

As you have Hashi's, are you addressing this with a strict gluten free diet and supplementing with selenium l-selenomethionine 200mcg daily to help reduce the antibodies?

Also, because Hashi's can cause low nutrient levels or deficiencies , you should test

Vit D

B12

Folate

Ferritin

All these need to be optimal for thyroid hormone to work properly.

Magsb80 profile image
Magsb80 in reply toSeasideSusie

Thanks so much for this great advice! I will go gluten free and get that selenium tomorrow!!! 👍🏼 My doctor is hopeless with this diagnosis (feel bad saying this but true) and I’ll print off that link that you have guven me. Thank you ❤️

haiiroika profile image
haiiroika in reply toMagsb80

Hi, i don't know much about thyroid, i'll be back on here after i get my results for some advice but i have to say, the gluten free is definitely worth doing. I also have systemic sclerosis(an autoimmune condition) and an under active thyroid and gluten causes me to feel dreadful, along with cows milk and soya so you could perhaps try swapping these with something else. Coconut milk, rice milk etc. Soya is usually used as an emulsifier so you'd be looking for sunflower oil in the foods, rather than soya but even just start with gluten and milk first :) i notice a HUGE difference when i cut them out.

maggzie profile image
maggzie in reply tohaiiroika

Hi, I make gluten-free pancakes with buckwheat flour and gluten-free chia seeds. dice onions thinly slice garlic herbs and spices of your choice, I like a tip of curry and thyme and allspice in mine, mix with water and shallow fry pancakes in a warm pan with a coating of olive oil fry slowly, served with baked beans sounds a bit odd, defiantly works for me as I have cut right back on meat , I have also made chocolate buckwheat pancakes with cocoa powder cinnamon drizzled with date sugar before serving , the chia seed give good doughy texture to pancakes I like mine a bit on the thick side not sure of measurements as this is my own recipe hope you enjoy.

WeeB profile image
WeeB

Hi, could i ask where you got your tests and how much they were ? ( ps i’m sure one of the amazing experts will be replying to your results any minute - but i’m guessing they will say that ‘in range’ is a bunch of nonsense and your tsh is way too high and you need to get your t4 higher but wait for the others on here to confirm as i’m new and just going on previous posts from others )

Magsb80 profile image
Magsb80 in reply toWeeB

Hi Wee B, I got them done through Thriva, cost me £89

WeeB profile image
WeeB in reply toMagsb80

thanks

SlowDragon profile image
SlowDragonAdministrator in reply toWeeB

Cheaper testing thyroid via Medichecks or Blue horizon including all four vitamins

WeeB profile image
WeeB in reply toSlowDragon

great thanks

jimh111 profile image
jimh111

What was your TSH and fT4 as measured by this 'endo'. If they were similar to the above results then it is dreadful. Your TSH should be lower and fT4 around 18 or 20. You are clearly under-medicated. I would check that this 'endo' is qualified.

Magsb80 profile image
Magsb80 in reply tojimh111

Thanks jim, the Endo didn’t even take my bloods. He just said to come back in 6 weeks for a review and get my bloods then

jimh111 profile image
jimh111 in reply toMagsb80

Looking at your earlier post the above results were from when you were on 25 mcg. Your endo changed your dose to 100 mcg which is perfectly reasonable. They want to retest you after six weeks. If this is correct your endo is correct. How long have you been on 100 mcg?

Magsb80 profile image
Magsb80 in reply tojimh111

I’ve steadily been increased for 25 / 50 / 75 not without being off work for 2.5 months with depression and not energy. Only just went in to 100 as of last week

jimh111 profile image
jimh111 in reply toMagsb80

100 mcg is closer to a full dose. Your doctor has increased your dose slowly which is a shame but this is the traditional way. It's better to start higher perhaps go straight to 100 mcg but few doctors are up to date on this.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private testing recommended here tests ALL these

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers. £99 often reduced to £79

Ask GP to test vitamin levels

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's.

Food intolerances are very common too, especially gluten.

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.

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

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

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

thyroidpharmacist.com/artic...

Magsb80 profile image
Magsb80

Thank you so much for all this information. I’m going to cut down on Gluten! Thanks for all those links!

SlowDragon profile image
SlowDragonAdministrator in reply toMagsb80

Need to not just cut down but be strictly gluten free diet

See link above by Chris Kresser

Magsb80 profile image
Magsb80 in reply toSlowDragon

I see what you mean! I’m on this as of tomorrow 👍🏼 Thank you!

Cro-magnon profile image
Cro-magnon in reply toMagsb80

I have similar test as you and since I am strictly gluten free, dairy free, legumes free and grains free, plus taking vitamins as selenium, zinc, vitamin D and B12 my life has change drastically. I loose lots of weight that I didn't gain and I feel amazing, with lots of energy, etc. I didn't make new test but I am sure that has improve, specially the Antibodies.

Check the paleo aotoinmune diet, it will help the process. And try to learn as much as possible about Hashimoto as any doctor will help with this, there is no scientific studies about how the diet can heal the gut and improve the symptoms, so they will treat it as witchcraft.

Good luck

Hello! I see a reply below says that you have Hashimoto’s - have you been diagnosed with this? I wondered how you found out, if you have?

Thank you!

SlowDragon profile image
SlowDragonAdministrator in reply toTakeCareOfYourself

You need to test TPO and TG thyroid antibodies

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12 too. Always get actual results and ranges. Post results when you have them, members can advise

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

cat_alli profile image
cat_alli

For me, once I got the Hashimotos diagnosis I went absolutely 100 % gluten free, I began to feel improved within a week, but it has taken three years to get back to feeling fighting fit. I bought the Hashimotos books recommended by Thyroid UK & learned a lot of useful info from my reading. I’m on 100 mcg Levothyroxin. It does take time to recover from the debilitating fatigue.

Aidan_ profile image
Aidan_

Highly likely a lot of people on here have underdiagnosed Alpha-Gal IgE Meat Allergy delayed reactions also Gluten it may not be it could be the Milk content & Sugar both have Alpha Gal ingredients & Sugar processed with Bone Char. It makes one Allergic to Dairy

Beef Pork products. Pig thyroid can also be dangerous if one has Alpha Gal from a Lyme tick bite...The Lyme Tick bites a 4 legged animal prior to Humans it then transfers the Alpha-Gal Sugar into Humans...Alpha-Gal IgE Panel blood test & (RAST) IgE Panel blood

test some may not all have a raised Total IgE & a good competent, 'not all' Allergist can do skin testing of Meats Beef Pork Lamb & Dairy...

Polly91 profile image
Polly91 in reply toAidan_

Hi Aidan

How do you find out about this and what symptoms would you get? Anything you can do about it if you are positive for this?

Thanks

Aidan_ profile image
Aidan_ in reply toPolly91

Depending on where you live if in the USA there is a Team at UNC in North Carolina Dr. Commons also some Private labs but most require a Doctors referral to be sent to the lab...They also do skin testing so maybe try calling a good Allergist & ask about Alpha Gal there are also numerous Groups on Facebook on Alpha Gal & food item ideas...If one has this they can see improvements within months providing they are off all Alpha Gal ingredients there is no present Cure yet but Reseach is now ongoing...Lone Star tick is responsible in the USA & in the UK & in Australia different strains are responsible & if Positive stay out of wooded areas is the best option there is also a Woman immunologist in upstate NY area I think she is at the Southampton Hospital where she was also on YouTube explaining this & other videos there as well try even Wikipedia on Alpha Gal Meat Allergy some places call it Mammalian Meat Allergy. Bring also your blood test results on thyroid to your appointment...Sometimes a B blood type may not show Alpha Gal & skin tests are used also some Tuna or Salmon can have Alpha Gal because of Dolphins or Whales these are Mammalians so cross-contamination is possible, aim for Line caught fish Tuna & Salmon & in Farm bred Salmon they are fed Beef pellets so avoid...Numerous foods have Alpha Gal it would make one also allergic to animal made gelatin & magnesium stearate...

Polly91 profile image
Polly91 in reply toAidan_

Thanks. I’m in the UK.

Aidan_ profile image
Aidan_ in reply toPolly91

u r welcome I am also on Facebook Gold Angel is me in Southampton area Aidan Walsh hope you find answers soon

Aidan_ profile image
Aidan_ in reply toPolly91

I have not been able yet to get tested for the Alpha-Gal Meat Allergy test I had a new GP I refuse to see her she saw me for 3 minutes said I have not read your file

yet asked then for a Sick note refused said my legs/brain works I want nothing to do with her ever again also Dr. Ron Davis from Stanford mentioned last month Sept 17th in London he believes the Cause is East African Sleeping Sickness & said

it is not only in Africa that conference is on YouTube 30 minute mark he said symptoms in these fatigue disorders are 100% identical to this Parasite...The CDC Controls all these medicines they are not available in pharmacies also

medichecks lab UK online runs this blood test one test looks for West/East strains & any other similar parasites the cost is 221 Quid I plan on running test soon...

Ari3 profile image
Ari3

You have to address Hashimotos how u can lower tpo antibodies pl are address this one as well besides titration of thyroid medc

Owlsy profile image
Owlsy

I know how you feel it's like my energy levels are 10 percent full I've changed my diet which has helped a lot no sugar plenty of vegetables etc no dairy no gluten no alcohol like a monk need to get mine tested correctly.

Orangeblossom85 profile image
Orangeblossom85 in reply toOwlsy

You should check out: daniel plan diet. It has helped me so so so much!

Orangeblossom85 profile image
Orangeblossom85

Please have a look on this: goodreads.com/book/show/306...

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