Underachieve thyroid symptoms or not? - Thyroid UK

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Underachieve thyroid symptoms or not?

Purplestaffie
Purplestaffie

Hi everyone new to thyroid UK, just wondering if the following symptoms are related to my underactive thyroid although recent blood test doc said was normal! For the past couple of weeks have had a really heavy head with dull pain and dizziness with a ringing/buzzing noise in my ears? This symptom has really set of my anxiety and am thinking the worst!

Has anyone experienced this at all?

Thanks in advance for any advice.

18 Replies
SeasideSusie
SeasideSusieAdministrator

Purplestaffie

Could possibly be low B12.

What are your latest test results? Can you post them with their reference ranges so we can see what your doctor says is "normal"? If you don't have them, just pop along to your surgery's reception desk and ask for a print out (don't accept verbal or hand written results, mistakes can happen, ensure it's a print out with reference ranges).

What brand of Levo are you taking? Has the brand been changed recently?

Hi SeasideSusie

I don't have my results but will request a copy of them. My doctor did say my B12 was slightly low and to have it retested in a months time. I am taking 100mg of Actavis and 25mg of wockhardt levo. Waiting on a referral to a neurologist and an endocrinologist.

It all just seems never ending have seen a rheumatologist due to painful joints and has labelled it as fibromyalgia.

Hopefully get some answers soon.

SeasideSusie
SeasideSusieAdministrator in reply to Purplestaffie

Painful joints could be low Vit D. Have you had that tested?

No I haven't had that checked for a while now.

SlowDragon
SlowDragonAdministrator

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

B12 range is very wide, for a GP to actually admit its low suggest you need to get folate, ferritin and vitamin D tested too ASAP

B12 often needs supplementing to be towards top of range when on Levothyroxine

Post results and ranges when you get them

Hi SlowDragon, got a copy of my last blood test results

Serum free T4 is 16.4 pmol/L (7.0 - 16) ref

Serum TSH is 0.742 Miu/L (0.38 - 5.33)

Serum vit B12 is 139 Ng/L (150.0 - 900.0)

Serum ferritin level 47 Ng/ml (10.0 - 210.0)

What do you make of these as I have no idea!

Thanks in advance.

SlowDragon
SlowDragonAdministrator in reply to Purplestaffie

See a different GP if yours refuses to help

Your B12 is BELOW RANGE

GP should test for Pernicious Anaemia before starting loading doses of B12 injections ASAP

Loading doses of B12

healthunlocked.com/pasoc/po...

Essential to test folate too as this works with B12 and likely too low as well

b12deficiency.info/signs-an...

GP must test vitamin D too

Ferritin is low. Ask GP to run iron panel

Assuming you are female, ferritin should be above 70

All these vitamins strongly suggest you are not on high enough dose of Levothyroxine

Low vitamins tend to lower TSH so hide that you need dose increase

Also firmly request coeliac blood test and both TPO and TG thyroid antibodies test ps This test is to confirm cause of being hypothyroid is due to autoimmune thyroid disease also called Hashimoto's

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 .

Getting vitamins optimal is first step

If you have raised antibodies then look at strictly gluten free diet after coeliac test to rule that out 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

Thank you SlowDragon for taking the time to look at the results. You have been very helpful. I am just waiting on a referral to an endocrinologist now so hopefully will get the help and support I need. My GP isn't really that helpful

Thanks again.

Marz
Marz in reply to Purplestaffie

Have you seen the Endo ? - how did it go ?

Purplestaffie
Purplestaffie in reply to Marz

Hi Marz no I haven't yet, my appointment is on the 18th February. It has taken so long to get referred. It's all just getting to me now constant pain for the last 2 years and the pain seems to be getting worse.

Marz
Marz in reply to Purplestaffie

Do research your Endo on-line. From reading the Thyroid UK Forum for some 7 years it seems most Endos specialise in diabetes and know very little about thyroid. What supplements do you take ? - and how much VitD are you taking ? Docs often prescribe far too little :-) I live in Crete and still supplement to keep levels at an optimal level ...

Purplestaffie
Purplestaffie in reply to Marz

Yes I will research first. I only take a multivitamin and B12 as that was low on the last blood test.

Marz
Marz in reply to Purplestaffie

Multi-vits are for the worried well :-) Rarely enough of the things you need and if you increase you could overdose on some. It would be better to test and supplement your needs.

How much B12 are you taking ? Based on your last B12 result you should have been given injections. I do not think your Endo will cover B12 issues. A result under 500 for B12 can result is neurological issues - and if not treated can result in serious damage. ( I know because it happened to me )

Purplestaffie
Purplestaffie in reply to Marz

Hi I am taking 500ug a day, my doctor didn't think it was low enough to warrant the injections and just told me start supplementing.

Marz
Marz in reply to Purplestaffie

The Guidelines for Cobalamin (B12) and Folate Deficiency should be sitting on your GP's desk - and obviously remain unread ! See link below. Your result is BELOW the range - so what is the point of ranges if your GP ignores them ?

onlinelibrary.wiley.com/doi...

b12deficiency.info/signs-an...

The above link details the signs and symptoms of B12 Deficiency - neurological ones come first. On the same website are important videos you can watch - and also a sample letter to write to your GP raising your concerns. All in all a helpful website. Which B12 are you taking ?

If you have any of the neurological symptoms then do remind your GP that the treatment differs - you need injections every other day until no further improvement.

Did you mean 500 or 5000 mcg of B12 that you are taking ? Also a good B Complex is needed to keep all the B's in balance and to provide B9 - that works with B12 in the body in an important way.

Your Ferritin would be better around 70 and VitD must be tested.

Really not sure what an Endo can do better than the advice given here - may I ask what you are hoping for ?

Purplestaffie
Purplestaffie in reply to Marz

Hi Marz

It is 500 it is the Holland & Barrat brand. I have been back to see a new GP this week and he seems to be a bit more careing and not dismissive so hopefully will be able to help me. The reason for seeing an Endo is because I have a lot of different symptoms that keep coming and going and then coming back worse. Seen a rheumatologist who thinks some of my symptoms are inline with fibromyalgia but not all of them, so I think they are just trying to rule everything out before labelling me with fibromyalgia.

Symptoms are joint and muscle pain neck, back, legs, hands and most painful the ribs and chest. fatigue, hot flushes appear out of the blue. Nausea, breathless, headache, and dizziness and blurry vision.

So there's a lot going on. Just want an answer so I can research the best ways to cope and help myself.

Forgot to add to symptoms IBS symptoms and heart palpitations

Marz
Marz in reply to Purplestaffie

Did you read the links I posted for you ? You can see that many of your symptoms are linked to your seriously low B12 as detailed in the link above. 500 mcg from H&B is not enough - Jarrow 5000 mcg from Amazon would be better - a lozenge to be kept under the tongue until dissolved for better absorption. Thorne Research and Igennus are good B Complexes - also Amazon. You need both.

Neither the Endo nor the Rheumatoligist will help your B12. You have to help yourself. You wrote on the Fibro Forum about your Tinnitus - again can be due to Low B12.

Fibromyalgia - means painful muscles - now you need the root cause. Do not be fobbed off with a Fibro diagnosis - once on your notes everything will be blamed on it.

Click onto my username and have a quick read of my Bio - yes I was once diagnosed with Fibro.

Did the new GP arrange injections ?

SlowDragon
SlowDragonAdministrator in reply to Purplestaffie

Multivitamins are not usually recommended on here because they offer far too little of what we do need, plus usually contains stuff we don't want like iodine

Most hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's

Iodine is not recommended for anyone who has Hashimoto's

drknews.com/iodine-and-hash...

Your GP should have tested for Pernicious Anaemia and tested folate before starting on B12 injections, especially as you have symptoms of low B12

b12deficiency.info/signs-an...

H&B supplements are cheap for a reason, because content is cheap and often of little use

Suggest you follow Marz recommendation and get Jarrow B12 . Either take 2-5 sublingual lozenges 1000mcg tablets per day (depending on symptoms) or get a bottle of 5000mcg tablets. When this bottle is finished, swop to 1000mcg tablets

Also recommended to take a good quality daily vitamin B complex, one with folate in not folic acid.

Eg Igennus Super B or Jarrow B right

B vitamins best taken in the morning after breakfast

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Ask GP or endo to test ferritin , vitamin D and to do Coeliac blood test too if you are not already on strictly gluten free

Vitamin D is frequently extremely low when under medicated

Ferritin can often be too low, or due to inflammation of Hashimoto's too high

Are you on strictly gluten free diet ?

IBS is often gluten intolerance

Most endocrinologist are only Diabetes specialists and sadly often know little about thyroid

please email Dionne at Thyroid Uk for list of recommended thyroid specialists

tukadmin@thyroiduk.org

Take along a list of Hypothyroid symptoms - tick all that apply

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

Getting vitamins optimal is first step. Plus strictly gluten free diet helps thousands

Dose of Levothyroxine increased slowly in 25mcg steps until TSH is between 0.4-1.5.

Palpitations are often due to being under medicated

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