Can't get diagnosed - thyroid?: Hi I am a new... - Thyroid UK

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Can't get diagnosed - thyroid?

Amethyst86 profile image
18 Replies

Hi I am a new member, I was wondering if I might have a thyroid issue going by these symptoms? Weight gain, feeling depressed, heavy periods, flaky skin, dry skin, constipation, tiredness, swelling at front of neck, memory loss, confusion, ears ringing, loss of concentration, pins and needles, pains in shins, bone pain, numbness and tingling in arms and legs, muscle weakness, sweats, loss of appetite. I am 31 and feel a lot older than this. Advice appreciated. Thank you

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Amethyst86 profile image
Amethyst86
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18 Replies

Have you seen GP yet? I would take a written list of all the symptoms and also a list of requests -

Ask for urgent referal to Endocrinologist and / or blood tests for

Thyroid Antibodies TPO and Tg

FreeT3 and FreeT4, T3 and T4

TSH also

Vitamin D

B12

Folate

Ferritin

Calcium

Also tests to check Adrenal function.

Amethyst86 profile image
Amethyst86 in reply to Mary-intussuception

Thanks, I have seen GP and had all these tests done, do I post?

Mary-intussuception profile image
Mary-intussuception in reply to Amethyst86

If you want people to comment .

When posting results, always give full information:

dates of tests, results with normal rreference ranges in brackets, and any comments written by lab or doctor.

Amethyst86 profile image
Amethyst86 in reply to Mary-intussuception

NOV 2017

TSH 6.7 (0.2 - 4.2) GP COMMENTS ABNORMAL CONTACT PATIENT

FREE T4 10.3 (12 - 22) GP COMMENTS ABNORMAL CONTACT PATIENT

FREE T3 2.1 (3.1- 6.8) GP COMMENTS ABNORMAL CONTACT PATIENT

TPO ANTIBODY 775 (<34) GP COMMENTS ?THYROID DISEASE

TG ANTIBODY >1000 (<115) GP COMMENTS ?THYROID DISEASE

FERRITIN 13 (15 - 150) GP COMMENTS ABNORMAL CONTACT PATIENT

FOLATE 2.3 (4.6 - 18.7) GP COMMENTS ABNORMAL CONTACT PATIENT

VITAMIN B12 157 (180 - 900) GP COMMENTS ABNORMAL CONTACT PATIENT

VITAMIN D TOTAL 18.4 (<25 SEVERE DEFICIENCY) GP COMMENTS ABNORMAL CONTACT PATIENT

CALCIUM 2.13 (2.20 - 2.60) GP COMMENTS ABNORMAL CONTACT PATIENT

CALCIUM ADJUSTED 2.12 (2.20 - 2.60) GP COMMENTS ABNORMAL CONTACT PATIENT

Mary-intussuception profile image
Mary-intussuception in reply to Amethyst86

So what did GP say when you saw him/her?

Amethyst86 profile image
Amethyst86 in reply to Mary-intussuception

The GP said I look to have thyroid disease but he can't be sure. Also been prescribed ferrous fumarate, vitamin D, folic acid and B12 injections as well as calcichew for the low calcium

greygoose profile image
greygoose in reply to Amethyst86

If i might just add a few comments here...

Doctors know nothing about nutrition, so always make mistakes when prescribing supplements :

- How much ferrous fumarate have you been prescribed? Did your doctor tell you to take vit C with it, to protect your stomach? Best to take about 1000 mg vit C.

- Is it vit D3 he's prescribed? How much? What he won't have told you is that taking vit D3 increases absorption of calcium from food, and therefore, you should also take vit K2 - MK7 with it, to make sure that extra calcium goes into the bones and teeth, and not build up in the tissues.

You should also take magnesium. No point in testing it, because it will always be in-range, but that doesn't mean you're not deficient, most people are. But, also, taking D3 will use up your magnesium and make you even more deficient. So, it's very important to take it.

- As SlowDragon has said, your calcium is deficient because your vit D3 is low. Taking vit D3 will raise your calcium, so it's really not a good idea to take calcium supplements at this point, see how much it rises with the D3.

- It's great that you're getting B12 injections, but you don't just need folic acid with them, you need all the Bs. Because they all work together and need to be kept balanced. Also, folic acid isn't the best form of folate to take. You would be far better off finding yourself a B complex, with all the Bs, and with at least 400 mcg methylfolate, and that will bring your folate up nicely, balance the Bs, and help your B12 injections to work better.

Whilst your levels are very low, and a lot of your symptoms will be due to low nutrients, it's not a good idea to start them all at once. So, if you haven't already started them, leave at least a two-week gap between starting each one. Just in case one of them doesn't agree with you. :)

Amethyst86 profile image
Amethyst86 in reply to greygoose

I have been prescribed 800iu vitamin D and 210mg ferrous fumarate 3 times a day

GP told me not to start folic acid until after first B12 injection thanks

greygoose profile image
greygoose in reply to Amethyst86

800 iu is not enough. It wouldn't raise the level of a sunburnt gnat!

Amethyst

Why have you posted that you " were wondering IF you have Thyroid problem . . . " when you have been told by your GP that you have Thyroid disease and EVERY test you had in November came back results Abnormal. Every nutrient you had tested was deficient and requires you to see your doctor for treatment and / or Specialists referal.

You may need Adrenals tested as well as testing for Pernicious Anemia. The sooner you see your GP the better.

Your GP has done all the Thyroid tests . Some people struggle to get their GP to do more than just TSH.

I would see GP on Monday.

Amethyst86 profile image
Amethyst86 in reply to Mary-intussuception

The GP didn't say for definite I have thyroid disease. He said he wasn't sure

Mary-intussuception profile image
Mary-intussuception in reply to Amethyst86

It says Thyroid disease on your result. Did you perhaps see a different GP?

See a different GP from last appoinment ( find out which one commented on results) OR just see ANY GP on Monday ask for URGENT referal to an Endocrinologist. Ask for your Adrenals to be checked out.

The blood tests results above confirm :

Hashimoto's Autoimmune Thyroiditis and Hypothyroidism.

Treatment is usually commenced with 50mcg of Levothyroxine and follow up bloods tests after several weeks ( 4 to 8 weeks).

Dose is then usually increased by 25mcg.

Then another retest after several weeks and possible further increase by another 25mcg to 100mcg (depending on blood results).

My Endocrinologist arranged an urgent Short Synacthen Test to check my adrenals first before starting Levothyroxine. Mine were OK so I was started on the 50mcg.

I am still on 75mcg.

It may take a while to feel better as treatment increased gradually.

It's dangerous to start off on full dose - hence gradual increase over several weeks.

Amethyst86 profile image
Amethyst86 in reply to Mary-intussuception

Thanks I had question marks put against the thyroid disease bit which is why I am under the impression the GP doesn't know. Will see different GP tomorrow

If your GP has looked at those results and said he wasn't sure you have a thyroid problem, I should avoid him/her like the plague, and definitely see someone else at the surgery for your treatment post haste. But it seems at odds with the "GP comments" - UNLESS you read it as comments made by the lab "for" the GP, rather than comments made "by" the GP. Are you quoting from the lab report, in which case it makes your GP's uncertainty and inaction all the more worrying given the lab has, in effect, told him/her how serious are your results; and worthy of a complaint against him/her..

Amethyst86 profile image
Amethyst86 in reply to

Thanks there were question marks put against the thyroid disease bit which I presume means the GP doesn't know

SlowDragon profile image
SlowDragonAdministrator

See a different GP, you need starting on Thyroid replacement hormone

Standard starter dose is 50mcgs. Blood retest in 6-8 weeks after any dose change. You will very likely need further increases in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

It's essential to improve low vitamin levels at same time

What dose of vitamin D prescribed and how much iron supplements?

Did GP say do not start folic acid supplements until after first B12 injection

You should have several B12 injections close together over few weeks to start I think

Calcium is low because of low vitamin D and will naturally improve with increase in vitamin D

You should have been prescribed loading dose of vitamin D

Your 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

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop 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

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)

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

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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

Amethyst86 profile image
Amethyst86 in reply to SlowDragon

I have been prescribed 800iu vitamin D and 210mg ferrous fumarate 3 times a day

GP told me not to start folic acid until after first B12 injection thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Amethyst86

800iu vitamin D is totally inadequate and directly against guidelines

You have severe vitamin D deficiency. It is essential to gave LOADING dose (basically a very large dose for 4-6 weeks)

A minimum of 5000iu daily required

Look up your own local CCG guidelines

Eg Oxfordshire CCG guidelines

oxfordshireccg.nhs.uk/profe...

This underlines that GP not only can't read a clear blood test showing you have autoimmune thyroid disease but also can't read a clear pathway guideline on how much vitamin D to prescribe

See a different GP

If you print out this (or your own area) vitamin D chart take it in as support for you need for adequate treatment

Ferrous fumerate is good. Also if you like liver eating once a week will help.

B12 injections, make sure practice don't make you wait too long before they start

Getting started on Levothyroxine ASAP will help too

See Box 1 towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see vitamin D, folate, ferritin and B12 all listed

onlinelibrary.wiley.com/doi...

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