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Thyroid UK
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Advice Please

Hi All

I have just had my recent bloods back at the end of September my TSH is 3.39 (0.38 - 5.33)

My doctor says all is fine no further action needed

Although I do feel loads better I am still not quite right

My main and only remaining symptom is balance and dizzy feelings these come and go all day long my GP has now decided that this is possibly BPPV and referred me to ENT my appointment is at the end of October

My question to you is do I still need an increase in Levo?

My GP says no

I currently take 75mcg daily

I have not had vitamins and minerals tested as GP refused and I can't afford private tests at the moment

I have some spare Levo should I increase myself? if so by how much?

Or should I just wait till after ENT incase I do have BPPV?

I am so confused and worry I might make things worse if I self medicate I work full time and have 2 children to look after

Thank you all for listening and any advice welcomed

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My advice would be to increase yourself. When you are on thyroid hormone replacement, your TSH should be one or under. Increasing your levo won't affect BPPV, if you have it. But, personally, I would put my money on low B12.

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Hi greygoose

Thanks for your response

I didn't realise low B12 could cause dizziness I think I will have to try again with my doctor to get it tested

If I increase my Levo should I start with extra 12.5mcg daily to see how I go and get bloods done again in 6 weeks?

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I think an extra 25 mcg would be better. And get a full thyroid panel in 6 weeks. The TSH alone tells you nothing.

Low B12 can cause all sorts of horrible symptoms. It can also cause permanent neurological damage. It needs to be at least over 500, preferably more. But doctors will call it 'fine' if it's just scraping in at the bottom of the range.

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sarahstevo1974 I didn't get referred to ENT for my BPPV, my GP diagnosed it there and then after checking ears (no infection) and asking questions about vision etc. Mentioned the Epley Manoeuvre but didn't do it (had reached my allotted 10 minutes by then, and darn it the Epley Manoeuvre would have taken another 4 or 5 minutes! ) so I asked if I could do it at home. Yes he said, but need a second person. Lots of info about BPPV and Youtube videos of how to do the Epley Manoeuvre. I did it myself, after the third day it was sorted.

However, I'm with Greygoose, I think your balance and dizzy feelings is more likely to be low B12.

As for not increasing your Levo, you should take this information to your GP in support of an increase, and if he wont do it then see a different GP

From thyroiduk.org.uk/tuk/about_... > Treatment Options

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor.

Also -

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

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Hi seasideSusie

When I saw my GP he checked my ears and eyes and did some other things such as getting me to touch my nose then his finger whilst he moved his finger around the room and announced I think u may have BPPV he told me about the epley manoeuvre and did referral to ENT he was adamant that the balance and dizziness were not thyroid related TBH I think he does not know and just wants to pass me over to someone else

I have just made an appointment online so going to go back to see him armed with the info you have provided and I'm going to ask again to have B12 checked hopefully he will do it this time

Thanks for your help

Reply

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. If they are too low they stop Thyroid hormones working.

I saw on previous post GP refused to test

Can you see different GP and ask again

Or if you can't get full thyroid and vitamin testing from GP

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. DIY finger prick test or option to pay extra for private blood draw

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

As you have Hashimoto's are you on gluten free diet? If not, you probably should try it

Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/why-changi...

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

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Hi SlowDragon

Going back to see GP next week going to ask again for B12 test as per advice and info from members tried GF but found it hard gluten is everywhere might give it another go

Thanks for your response

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Before I went Gluten Free I spent couple of weeks working out what else I could have instead

Check out the "Free From" section in supermarkets

Breakfast- certified gluten free oats are very cheap. Make your own museli adding dried fruit, seeds, nuts or have as porridge

Bread - most GF is expensive and not brilliant and are better toasted than as bread. M&S do very good range and their "Thins" make reasonable sandwich. Warburtons sour dough is good.

Get some gluten free flours if you like baking

Lots of ideas on the net, cook books, magazines, Coeliac UK too.

The number of people who are gluten free is growing enormously.

It is tough the first few weeks, but it gets easier. Eating out is fine, most menus have GF options, some are absolutely brilliant.

Eating at friends and family can be MUCH trickier. Easier if you say it's just like being coeliac- they seem to understand that and then make an effort

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What is BPPV?

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Hi Humanbean

BPPV is Benign Paroxysmal Positional Vertigo the GP said it affects balance and movement and causes dizziness and decided that's what I have! We shall see

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I had major problems with my balance, and sometimes my head would spin. I no longer get the spinning sensation, and I only have problems with my balance in the dark now.

The things that helped me were going gluten-free and taking high-dose vitamin B12. I have come to the conclusion that I have gluten ataxia, self-diagnosed, naturally. Doctors have never heard of it. In gluten ataxia, gluten damages the cerebellum in the brain, rather than the gut as it does in coeliac disease.

I take B12 in two forms which I alternate - methylcobalamin and adenosylcobalamin.

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Hi

I'm seeing GP again this week and from responses on here I'm inclined to think it is B12 related so I'm going to request a test again hopefully he will do it this time!

The constant feelings of movement even when I'm still and the balance issues when I move are really starting to affect everyday tasks it's the one thing that I can't seem to shake other than that I'm feeling loads better probably the best I've felt in over a year!

Did try GF but really struggled to keep it up might have to give it another go but I love bread and GF bread is awful 😬

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I agree 100% about GF bread. I've only eaten nice GF bread in a local restaurant. It was made on the premises, not bought in a supermarket.

One day I might try and make my own.

One day...

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