Thyroid cancer, Tinnitus and Gluten intolerance. Is it all connected?

[Suesews]

Hi, I have just come across this website so am very new, I have read a number of posts regarding thyroid and related problems and wished I had found this earlier.

I had a total thyroidectomy and the removal of a parathyroid gland back in 2004 and since then I have been on Levothyroxine. I was on a dose of 150mg for a good number of years but over the last 3 years the consultants and doing there best to reduce my dose, I now alternate daily between 150mg and 125mg. About 3 years ago I complained to the doc that I suffered from extreme tiredness, I was sent to an endo doc who did lots of blood tests but was told that there is nothing wrong as all tests are 'normal' They made me feel like I was wasting there time and suggested that I join a gym! so I have just put up with the tiredness ever since then. It is as if I only have a certain amount of energy per day and if I use it up too soon I 'go over' as my hubby says!

I also have Tinnitus in my left ear which started at the same time as my Thyroid cancer. I had an MRI at the time it started and various hearing tests but was told that there is no cure and nothing can be done so have lived with it ever since. But 3 months ago I started with a constant clicking in my left ear and twitching spasms in my eyes. I am going for another MRI tomorrow.

I also suffer from Gluten intolerance for about the last 3 years, suffering with bloating, wind and diarrhoea at the slightest hint of gluten. Again went to see the gp, was sent for a blood test, nothing showed up and was told to just get on with it!

I have read a number of posts on this site today and am astounded to read that all of my problems could well be related. My annual check up with the thyroid doc is in the next few weeks, I would love to know if anybody else suffered from all these problems together?

Thanks

[Clutter]

Suesews,

They're not necessarily related. I had thyroid cancer but I didn't have gluten intolerance or tinnitus.

The coeliac screen is false negative a lot of the time and some people don't have gluten intolerance but they are sensitive to gluten. If you feel better for not taking gluten you should avoid it.

Don't accept doctors telling you blood results are normal. The thyroid ranges are very broad so you could find TSH 0.35 and TSH 4.20 'normal' in range 0.35 - 4.20 but you won't feel well with the higher level. Get into the habit of asking what the results and ranges are. You can post them on the forum for interpretation and advice. Ask your GP receptionist for a copy of your last thyroid tests and ranges and post them in a new question for advice.

Hypothyroid patients are often low/deficient in ferritin, vitamin D, B12 and folate which can mimic hypothyroid symptoms of fatigue and musculoskeletal pain so ask your GP to do blood tests.

[shaws]

Members who have the same/similar to you will respond.

I have my thyroid gland and am hypo but I would certainly hate to be without my gland altogether as I believe we are all mistreated, undertreated, or dismissed due to our blood tests with the medical profession having no knowledge at all of clinical symptoms, of which tinnitus is one.

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

Tick off yours and if we were optimally treated we'd have none.

Most of us on this forum have no confidence in doctors or endocrinologists who have they have let us down badly. They seem not to know the best way to help patients recover and be symptom-free.

The worst thing they can do is adjust doses to try to 'fit' the patient into some sort of cage.

I believe that all persons who have no thyroid gland at all should have a combination of T4/T3 at the very least (liothyronine/levothyroxine).

If you are a member of Facebook you can look up Lorraine Cleaver who has a case before the Scottish Parliament because of the state she was left in after a thyroidectomy and the insistence that levothyroxine alone is to be prescribed.

If you are gluten-sensitive I am guessing that the doctors have not tested you for thyroid antibodies. If you have antibodies going gluten-free can reduce the antibodies attack on your thyroid gland.

Ask GP for a new test. If he wont do all of the tests you can, if you can afford it, get a private one from our recommended labs.

Tell your GP you've taken advice from the NHS Choices for information/advice about dysfunctions of the thyroid gland - Thyroiduk.org.uk.

He or lab may not do them all but we have recommended labs who will do those the doctor cant/wont.

TSH, T4, T3, Free T4, Free T3, thyroid antibodies, B12 Vit D, iron, ferritin and folate.

Always get a print-out of your results with the ranges and post on a new post for comments.

We have to read, learn and ask questions but we can get well but sometimes we have to change to other thyroid hormone replacements.

I am not medically qualified and had undiagnosed hypothyroidism for a long time. Being diagnosed for things I didn't have and no diagnosis for what I did have.

[Hidden]

Can I ask what kind of tinnitus it is?

[Suesews in reply to Hidden]

It is high pitched and consistent in my left ear.

[Nanaedake in reply to Suesews]

Have you looked into vitamin B12 deficiency? Tiredness and Tinnitis are symptoms I believe. Have you checked for pernicious anaemia and intrinsic factor? I had thyroid cancer and didn't have those problems although had other ones. Check out the Pernicious Anaemia Society website or there is a forum on HealthUnlocked. Also, if you are on any other medication you need to discount side effects.

You might have low stomach acid which is common for hypothryoid patients. People on this forum have various ways of dealing with this, if you post a specific question you'll get responses but if you have pernicous anaemia that might also affect your stomach.

[Suesews in reply to Nanaedake]

Hi, yes just had my blood test results back. My B12 is 313, Folate 12.3 and Ferritin 36. My report says "No Action" presumably this is advice to GP. Can this be right?

[Margo in reply to Suesews]

Reading this 2 years do you still have low B12? In some countries anything under 500 is treated.

I had thyroid cancer 2003 and had radio-active iodine x 2 which is known to affect the gut which can cause gluten intolerance. One of my parathyroid glands were removed (accidently) during surgery. I also developed tinnitus after losing my thyroid.

I have B 12 injections once a month but it hasn't made an difference to the tinnitus and deafness.

[Suesews in reply to Margo]

I used to take 5000 b12 per day but stopped about 4 months ago when my b12 blood results got to just over a 1000. I still have tinnitus and have accepted that this will never go away😒

[Margo in reply to Suesews]

Yes Suesews I too have accepted that the tinnitus will never go away.

[Suesews]

Thank you all for your replies. I will post my last results on a new post.