First blood result since starting levo, still have head/balance issue and worried

[jamjar67]

I don’t know if I have to re post my initial blood results and ranges but they are on my profile..... but in short my very 1st TSH was 9.3, (I was also confirmed autoimmune hypothyroid) I was prescribed 100mcg of levothyroxine but decided to start myself on 50mcg..., I also started with a functional medical practitioner who said I had Candida in my blood and also said my adrenals needed support - I started taking (following her advice and advice from this forum) B vits, 200mg selenium, hemp oil, innate response, probiotic, digestive enzymes, magnesium, 5000 Vit D with K2, I have eliminated gluten and moved to sheep and goat milk.... my new blood came back as TSH 2.1 (that is all the Dr tested saying anything else is unnecessary which surprised me as she has had her thyroid removed )...(also had my bloods done 1st thing eliminating vits and fasting as advised on here). they are leaving my dose at 50 and retesting in Jan.....

Just before I was diagnosed I had this awful episode where I turned my head in bed and my head went really funny like if I was stood up I would have fallen over..., then I got in the shower and was washing myself and I lost my balance, then I got out the shower and was putting on moisturiser and my head ‘crashed’ and I staggered across the floor..., v scary indeed!!! The Dr said because the episodes only lasted 20-30secs it’s most likely BPVV...., I also had double vision when I looked at some birds flying in the sky.., but that hasn’t happened again although my eyesight has become a lot more blurry - I have been checked by optition.

So approx 8 weeks on I still have this weird off balance feeling in my head ( my head hasn’t ‘crashed’ again which is great!!! But I have noticed it gets more pronounced when my stress levels rise, when it’s bad even my own voice vibration affects it.....the Dr just said we’ll look at doing the Epley manoeuvre in the new year..., I’m not convinced this is what it is as the room didn’t spin and I feel it’s def linked to stress as when I meditate it eases it..., I have just bought some CBD oil to help with the stress...

So has anyone else had balance issues

And should I get my own bloods done before my next test with the Dr

Also my ferritin was borderline in range so should I supplement now or wait until my private blood test (I had been bleeding very heavy for a few months and had the coil fitted in August so I thought this could have affected my iron)

Sorry for the long post but I am so worried as I am used to bouncing back with my health and nothing seems to be working - although I feel my TSH results were positive and made me glad of my decision (with help from forum members) to start with 50mcg.

Thanks for any thoughts x

[greygoose]

How's your B12? I had similar symptoms when my B12 was low.

[jamjar67 in reply to greygoose]

serum vit B12 (XE2pf) 657ng/L range 211.0 - 911.0

I did mention active B12 to the FMP (who FYI has Addison’s disease herself and she said she was trained by Barry) ...I mentioned it to her as another forum member said I should check out PA..., but fmp said she doesn’t think I gave that...I am seeing her again in Jan so can mention B12 again or do you think I should supplement as a precaution or can I order an active B12 test myself?

[greygoose in reply to jamjar67]

You could order an active B12 test yourself, yes. I'm not sure the NHS even does active B12 tests. I wouldn't start supplementing before testing, if I were you, because you have to be off B12 for 5 months to get an accurate reading.

[jamjar67 in reply to greygoose]

My B vits contain some B12, so should I stop taking those too?

[greygoose in reply to jamjar67]

If you're taking vit B12 in any way, there's no point in testing, because you wouldn't get a true result. So, yes, you would have to be off it for 5 months.

[m7-cola]

What’s your pulse rate? I had dizziness when under medicated for hypothyroidism.

[jamjar67 in reply to m7-cola]

I haven’t checked my pulse but I will..., mines not dizzy it’s more like feeling a bit like on a boat.., but when stressed I feel it at the top of my head and the other day when the kids were bickering and shouting I felt this kind of pulling up in my head and had to leave the room, but when I meditate it brings it down..., it’s very odd and I’ve never had anything like this before...

[SeasideSusie Remembering]

jamjar67

With BPPV the room doesn't necessarily spin. I had BPPV last year, with me the symptoms I had were when I went to get up out of bed I would fall back again. I had to manoeuvre myself out of bed in a certain way to stop the falling back. My GP mentioned the Epley Manoeuvre but didn't offer to do it. I found videos on the internet and did it myself. After doing it for 3 days I had a massive spinning sensation when I finished the manoeuvre (presumably when the crystals shifted) and I've never been bothered with any symptoms since. It's certainly worth a try, nothing to lose and it doesn't cost anything.

I can't understand why your doctor wants to wait until January, it would take about 5 minutes for him to do it.

[jamjar67 in reply to SeasideSusie]

I have no idea why she wants to wait until Jan as she initially said they’d do it when I came in for my 1st blood results, but she ended up just leaving me a message with the receptionist..., I had to ask atleast for a telephone conversation...then she said she would need to book it in so will do it in January......I have also looked on the internet and done it a few times myself but it’s still there..., I am seeing a chiro who is doing NRA (network spinal analysis) this was recommended to me and he said he will do the Epley manoeuvre for me next week......, if it doesn’t work I think I will book to see a different Dr..., one thing that gives temporary relief is turning the shower to cold at the end of my shower 🤔

[jamjar67]

Thanks for that clear outline..., the Dr I saw is a senior in the practice, I have always held her in high regard.., she also had her full thyroid out and takes 200mg levo so I thought she’d be more knowledgable, it’s very disappointing, I’m going to get my own bloods done and maybe ask to see a different Dr..., but I don’t know what to do if they are adamant about just testing TSH and deeming it ok if it’s within range..... it was a different Dr who diagnosed me, my tpo was >1300 and she said I had autoimmune thyroditis..., the senior Dr was dismissive when I asked if AT is Hashimotos and she said no you need a nodule, your just hypothyroid!!

[jamjar67]

Is there some sort of medical recommendation that I could take which outlines these levels that I could put in front of the Dr ? Just to back me up a bit when I’m infront of them ? Thankyou

[jamjar67]

Brilliant...Thankyou!

[jamjar67]

Hi....I just wanted to update....I went to see my GP and explained that I thought I might be a bit undermedicated as although a lot of symptoms have subsided the most bothersome balance feeling and tinnitus is still there.., she said my response to 50mcg had been really good coming down from TSH 9.3 to 2.1 in 6 weeks, I think her concern was overmedicating me as she knows my history of anxiety and panic disorder but she agreed that I should try a little bit more and see how I get on so I’m going to to alternate 50 & 75....., in the meantime I have ordered the Medicheck ultravit thyroid blood test which says to come off vits containing B12 for 1 week which will be this Fri....therefore do I need to wait I till Fri before upping my dose or shall I up my dose and wait to do the blood test 🤔 it’s all very confusing but I get where my GP is coming from re upping the dose slowly and I do feel she had my best interest at heart.

Many Thanks for any opinion x