Newbie...not sure what is wrong with me - Thyroid UK

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Newbie...not sure what is wrong with me

LuciT profile image
17 Replies

Hi all I am here because I think I have something wrong with my thyroid. I had 3 ultrasound scans on it with 2 of them saying I have an enlarged thyroid gland. My current symptoms are heavy periods, low mood, dry skin, tiredness, headaches, weight gain, feeling cold with sweats, also developed asthma very recently. Have also had below range ferritin too

I had a thyroid function test in Nov 2011 which put my TSH at 5.3 (0.2 - 4.2) FT4 15.6 (12 - 22)

One in Jan 2012 showed TSH 2.2 (0.2 - 4.2) FT4 14.7 (12 - 22)

Current one in Dec 2017 showed TSH 4.8 (0.2 - 4.2) FT4 14.6 (12 - 22) FT3 3.4 (3.1 - 6.8)

My thyroid sometimes swells up at the front too. Advice welcome thankyou

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LuciT
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SeasideSusie profile image
SeasideSusieRemembering

Luci

To be able to compare thyroid tests accurate, they all have to be done under the same conditions and we always advise here to book the first appointment of the morning and fast overnight.

Your FT4 is very similar in all your tests, but your TSH has fluctuated. The higher ones could possibly be early morning tests and the lower one an afternoon test. But it would be a good idea to have thyroid antibodies tested too. The NHS rarely do Thyroid Peroxidase (TPO) antibodies and almost never do Thyroglobulin (TG) antibodies but if TPO comes back negative it's a good idea to have TG done as they could be positive.

You could get a test done with one of our recommended labs, and if you do that I would get the bundle that tests vitamins and minerals too. If your ferritin has been below range it's possible that other nutrients could be low as well.

We really need to see

TSH

FT4

FT3

TPO and TG antibodies

Vit D

B12

Folate

Ferritin

These can all be done with one of the following fingerprick (or venous blood draw) tests

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

When you have the results, put them in a new thread and members will comment.

Did your GP do anything about your low ferritin?

LuciT profile image
LuciT in reply toSeasideSusie

Thankyou all bloods were done at the same time early morning and I fasted. I have included my results from Dec 2017. I did a private test with Blue Horizon can I post these? I don't know what I should be doing. Nothing done about low ferritin

SeasideSusie profile image
SeasideSusieRemembering in reply toLuciT

Yes, please post your Blue Horizon results Luci.

Good that all tests were done early morning and fasted, it gives us a clue but let's see your BH results first :)

LuciT profile image
LuciT in reply toSeasideSusie

Blue Horizon results

TSH H 5.67 (0.2 - 4.2)

FT4 13.3 (12 - 22)

FT3 4.0 (3.1 - 6.8)

Thyroid peroxidase antibodies H 373 (0 - 34)

Thyroglobulin antibodies H 255.3 (0 - 115)

SeasideSusie profile image
SeasideSusieRemembering in reply toLuciT

There we have it, as I expected.

Thyroid peroxidase antibodies H 373 (0 - 34)

Thyroglobulin antibodies H 255.3 (0 - 115)

Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results (which is probably why your TSH was so different).

If your GP will accept your BH results, then you should get a diagnosis of autoimmune thyroid disease (Hashimoto's is what we call it) because you have an over ange TSH and raised antibodies.

From thyroiduk.org/tuk/about_the... > Diagnosis

The 'UK Guidelines for the Use of Thyroid Function Tests' state that, "There is no evidence to support the benefit of routine early treatment with thyroxine in non-pregnant patients with a serum TSH above the reference range but <10mU/L (II,B). Physicians may wish to consider the suitability of a therapeutic trial of thyroxine on an individual patient basis." If your TSH is above the range but less than 10, discuss a therapeutic trial of thyroxine with your doctor.

Subclinical hypothyroidism (where there are elevated TSH levels, but normal FT4 levels, possibly with symptoms) has been found in approximately 4% to 8% of the general population but in approximately 15% to 18% of women over 60 years of age.

Subclinical hypothyroidism can progress to overt hypothyroidism (full hypothyroidism with symptoms) especially if there are thyroid antibodies present.

If thyroid antibodies are found, then you may have Hashimoto's disease. If there are thyroid antibodies but the other thyroid tests are normal, there is evidence that treatment will stop full blown hypothyroidism from occurring.

Dr A Toft, consultant physician and endocrinologist at the Royal Infirmary of Edinburgh, has recently written in Pulse Magazine, "The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.2 But if it persists then antibodies to thyroid peroxidase should be measured.

If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up."

You can obtain a copy of the Pulse article by emailing Dionne at tukadmin@thyroiduk.org and it is question 2 that covers this. Print the article, highlight the relevant bits and show your GP. Tell him that you have taken advice from NHS Choices recommended source of information for thyroid disorders (which is ThyroidUK, don't mention internet or forums, they don't like that), and ask to be started on Levo.

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.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. 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.

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

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

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. If not already done then it would be a good idea to have the following tested:

Vit D

B12

Folate

Ferritin

If your Ferritin was below range previously then your GP should have done a full blood count and iron panel to see if you had iron deficiency anaemia.

LuciT profile image
LuciT in reply toSeasideSusie

Thankyou I have results of these they are

FERRITIN 21 (30 - 400)

FOLATE 4.1 (4.6 - 18.7)

VITAMIN B12 224 (190 - 900)

VITAMIN D 30.2 (25 - 50) Given D3 tablets before moving on to an oral spray by Better You

Complete blood count only showed MCV below range 77 (80 - 98) and MCHC 365 (310 - 350)

SeasideSusie profile image
SeasideSusieRemembering in reply toLuciT

Luci

FERRITIN 21 (30 - 400)

Complete blood count only showed MCV below range 77 (80 - 98) and MCHC 365 (310 - 350)

Then that would suggest iron deficiency anaemia. As you are under a haematologist then I suggest you ask for appropriate treatment.

NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

cks.nice.org.uk/anaemia-iro...

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

As your ferritin is below range, I would ask for an iron infusion. If given iron tablets then take each one with 1000mg Vit C to aid absorption and help prevent constipation, and take ion 4 hours away from thyroid meds (which you should have prescribed now) and 2 hours away from any other medication and supplements as it affects their absorption.

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.

You can also help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

**

VITAMIN D 30.2 (25 - 50) Given D3 tablets before moving on to an oral spray by Better You

Were you given loading doses of D3 and did you complete them?

What is your current level and what dose of BetterYou are you taking?

Are you also taking D3's important cofactors?

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and 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.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and 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

naturalnews.com/046401_magn...

Check out the other cofactors too.

BetterYou do a combined D3/K2 spray.

The Vit D Council recommends a level of 100-50nmol/L so when you reach that level you'll need to find your maintenance dose 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 City Assays vitamindtest.org.uk/

LuciT profile image
LuciT in reply toSeasideSusie

Thankyou I was discharged from haematology and sent away with 8 week course of iron tablets. GP will not re-refer me again.

I was not given loading dose of vit D just the tablets. This is my current level of vit D and I started the Better You 3000IU in September 2017. Not taking cofactors for vit D

SeasideSusie profile image
SeasideSusieRemembering in reply toLuciT

Luci

Did the haematologist not ask for you to be re-referred if your ferritin fell below 50? I understand that is normal.

I would show the NICE Summary to your GP and ask for treatment. You can print it off from the link I gave.

Was your original Vit D level below 30? If so you should have had loading doses - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar.

I would go and see your GP and say that as you are still currently only 0.2 above this level then can you have the loading doses.

3000iu daily will take a very long time to raise your dose. If your GP wont give you the loading doses then with the BetterYou spray you should triple dose and take 9000iu daily for 4 weeks, that will bring you close to the loading doses, then reduce to 3000iu daily then retest 3 months after starting.

The cofactors are important, as indicated above. I would buy the combined D3/K2 spray and take whichever magnesium is most suitable for you.

LuciT profile image
LuciT in reply toSeasideSusie

Thankyou the haematologist has said for me to be re-referred if my ferritin falls under 50 but the GP hasn't done this

SeasideSusie profile image
SeasideSusieRemembering in reply toLuciT

Then you must remind your GP of what the haematologist has said and insist on being re-referred. Take it to the Practice Manager if you have to.

LuciT profile image
LuciT

I also supplement vit D and folate GP haematologist said B12 looked a little low too and put me on B12

SeasideSusie profile image
SeasideSusieRemembering in reply toLuciT

Luci

B12 injections or supplements?

Did you also have folic acid prescribed? You should do with a below range folate level.

Once folate level is in range then when taking B12 we need a good quality B Complex to balance all the B Vitamins.

LuciT profile image
LuciT in reply toSeasideSusie

Injections every 3 months haven't been prescribed folic acid at all

SeasideSusie profile image
SeasideSusieRemembering in reply toLuciT

Luci

You must point out your folate deficiency to your GP and ask for folic acid to be prescribed.

I don't know who's at fault here - the haematologist or the GP, but whoever it is has been rather negligent.

SlowDragon profile image
SlowDragonAdministrator

As you have Hashimoto's, you should be started on Levothyroxine. Normal starting dose is 50mcg and bloods retested in 6-8 weeks. Dose increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

If your GP still refuses to treat see different GP or ask for referral to endocrinologist

Essential to pick a recommended endo, most are Diabetes specialists and useless with thyroid disease

please email Dionne at

tukadmin@thyroiduk.org

Ask for list of recommended thyroid specialists

Hashimoto's affects the gut and often 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...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

Rmichelle profile image
Rmichelle

Hi there my iron was a dire 10 and i have managed to get it up to 27 3 months later-one go refused to refer me but because i am celiac i have now been referred to haematology(only taken 7 months!!!) Gp thought he hasnt got a reason to refer to heam!!lol even though my symptons are breathless, exhaustion, trembles but i will get that referral!! I want it.😊😊 good luck.

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