ENT Appt MRI refferal given but forgot to menti... - Thyroid UK

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ENT Appt MRI refferal given but forgot to mention my throat, what to do?

jamjar67 profile image
19 Replies

Sorry but I’m in a bit of a state, I had an appt with ENT on Thurs about the ringing in my ears and this weird unsteady feeling in my head. Thing is my voice has been getting steadily more hoarse and gravelly over the past month with a change to the range of my voice (not that I was ever a good singer but as daft as it sounds I can’t sing!) it’s croaky or sound doesn’t come out. (Probably a blessing to those around me lol)

Thing is I thought about telling him during a conversation we were having and would you believe by the end of the conversation I forgot!!! I knew there was something else I wanted to say but couldn’t remember!! I’m so mad with myself!!

I phoned the next day but the Dr wasn’t working as he only works Weds and Thurs so I explained and asked that as I’m being referred for an MRI could they add to the referral to check out my throat as well as my head 🤔 The chap I spoke to said he would speak to the head of ENT but I didn’t hear back.

So this weekend I have written a letter which I was going to take in on Monday or should I just book another appt with my GP or both??

I’m so annoyed with myself but lesson learned to write everything down in future!!

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jamjar67
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19 Replies
greygoose profile image
greygoose

They changes in your voice are probably down to your thyroid. Are you hypo? Sounds like typical hypo symptoms.

jamjar67 profile image
jamjar67 in reply togreygoose

Yes hypo but this is new to me and as my throat has never been checked I just thought it was worth looking at....I’m probably being paranoid now but my thyroglobulin antibodies were quite high last time I checked and on the Thyroid UK website it mentions if your voice changes for more than a few weeks to get it checked out, I thought if they are scanning my head they may as well have a little look at my throat.

greygoose profile image
greygoose in reply tojamjar67

Not sure a scan will tell them much. I went to ENT before I was diagnosed, because of problems with my voice. He put a camera up my nose and down my throat, and pronounced me 100% healthy! I had Hashi's, but apart from that, I suppose I was! So, it's doubtful if he'd be able to tell you if your voice changes were due to hypo, if they are - my ENT man didn't even seem aware of the fact that the thyroid is next to the throat!

If your Tg antibodies are high, then you have Hashi's.

jamjar67 profile image
jamjar67 in reply togreygoose

Hi - I realise I have Hashis, I just want to make sure my gravelly hoarse voice in not a symptom of something more sinister - I just thought if I'm already having an MRI they possibly could just take a look, that would save having to have a camera up my nose and down my throat - I would be terrified!! If nothing showed up I would know its related to my Hashis and I could stop worrying about it.

Thanks

SlowDragon profile image
SlowDragonAdministrator

Ringing in ears (tinnitus) and feeling like walking on a boat ....typical symptoms of low B12. Extremely common when hypothyroid

b12deficiency.info/signs-an...

Have you had Vitamin D, folate, ferritin and B12 tested?

Or thyroid antibodies?

How much Levothyroxine are you currently taking?

Have you had bloods retested?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary 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 .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Add recent results if you have any

Come back with new post once you get results and and ranges

jamjar67 profile image
jamjar67 in reply toSlowDragon

Hi SlowDragon

Below is my most recent B12 test including MMA, I have been supplementing with a high strength B12 sublingual supplement 35,000mcg of 3 different types of B12 and I took 1 a day for a couple of weeks. I didn't take any for 2 weeks before the test but I know supplementing skews results however I understood from the Pernicious Anaemia site that MMA would likely be raised with a deficiency, also you can see from the results further below, the oldest I was taking a regular B supplement which includes B12 and the other one I was supplementing with Pure Encapsulations B12 and patches - So it seems like I am absorbing B12 but it is complicated and I understand its only what gets into the nuclei that matters so I am wondering whether to just try self injecting just to see if it makes a difference. I'm also thinking of testing Homocysteine. I did my intrinsic factor antibodys but that came back normal.

I wanted to try and establish that I actually need to self inject before doing it..... its all totally confusing. Also this ringing all started the day before I was diagnosed when I felt pulling in my head which made me stagger across the room, I lost the cognition in my left hand, pins and needles in fingers and tingling in legs, blurry vision (although my eyes were tested and nothing untowards was spotted), also double vision when I looked up (haven't had that since) - I have had this unsteady feeling since this episode, it was worse than it is now but I get good days and bad days and its there everyday and has been now for a year -

I have ordered a new Thyroid test which includes RT3 so will post results when I get results.

I also did the Blue Horizons DNA test revealing I am Heterozygous DIO1 and DIO2 so possibly have conversion issues.

I have actually bought some T3 online but haven't actually used any yet .as I was trying to raise my iron first.

To be honest I'm freaking out at the moment as I'm terrified I might have MS as my mother did...... also as my Dad died of Cancer I'm concerned that my voice change could be something more sinister than just a symptom of Hashis....

I'm trying not to worry but as I went to the Drs for several years complaining that the 'chemistry of my body has changed' with things steadily going wrong and was only diagnosed with Hashis when it was smacking them in the face, I'm not the most trusting!

I never tested for coeliac but went gluten free as soon as I was diagnosed and I have followed the advice re blood draws, eating near Levo etc..

14/12/18

Thyroglobulin 579 (0 - 115)

29/8/19

Serum B12 1549.0 ng/l (187.0 - 883.0)

MMA 88 nmol/L (0 - 280)

Active B12 > 128 pmol/L (25 - 108)

5/4/19

TSH 0.264 (0.27 - 4.2)

FT3. 4.51. 3.1-6.8

FT4. 21.4. 12-22

Active B12. 155. (37.5 - 188)

Folate. 19.8 (3.89 - 26.8)

Vit D. 85.8. (50 -175)

Ferritin. 48. (13-150)

CRP 0.89. <5

5/2/19

Levo dose 50/75mcg

TSH 2.34. (0.27 - 4.2)

FT3. 4.43. 3.1-6.8

FT4. 15.6 12-22

Active B12. 123. (37.5 - 188)

Folate. 14.48 (3.89 - 26.8)

Vit D. 97.1. (50 -175)

Ferritin. 14.1. (13-150)

SlowDragon profile image
SlowDragonAdministrator in reply tojamjar67

So you haven’t had thyroid levels retested since April?

What dose are you taking and how long on that dose ?

Suggest you get FULL thyroid and vitamin testing

jamjar67 profile image
jamjar67 in reply toSlowDragon

Yes April was my last check, I have ordered another which I’ll do this week and post the results.

I’ve also ordered another saliva cortisol and blood cortisol Test.

I’m currently on alternate dose 100/75mcg Levo which I went on following my Feb 2019 results.

Thankyou 😊

.

SlowDragon profile image
SlowDragonAdministrator in reply tojamjar67

So you may be ready for dose increase in Levothyroxine

Come back with new post once you get results and ranges

Research is looking at using T3 as treatment for MS .....early days ...but looks interesting

multiplesclerosisnewstoday....

Lora7again profile image
Lora7again

I have choking fits so I only eat small amounts of food at a time. As for ringing in your ears - me too but there is nothing I can do about it. These are all thyroid related I'm afraid.

jamjar67 profile image
jamjar67 in reply toLora7again

My friend had choking fits when she ate meat, she used to feel like she had something stuck in her throat, we had to call an ambulance when out for dinner one night..., turns out she has Gerd, not sure what she takes for it but it doesn’t seem to happen now. I got her to get a thyroid check which was borderline but her iron and Vit D were low so she’s supplementing them.

I mentioned to the consultant re tinnitus being related to my autoimmune and thyroid and that it was just another thing gone wrong in a long list of stuff just before I was diagnosed - he said he’d never heard of it being related to thyroid and I said well there are lots of thyroid patients with tinnitus - I said I was going to try another combo of treatment (adding T3) and he said if it helps can I go back and tell him., so I guess atleast he was interested.

I read on your post that you are in remission so long may it last 🤞🤞

A lady I know has a daughter who was diagnosed with Graves and MS last year, she’s early 20’s and a 13month boy, it’s so upsetting...., I’ve directed her to this site but I think she’s having a hard time coming to terms with things as you can imagine!!

I read your profile and I am also so angry at being left for years before being diagnosed, the diagnosis, treatment and understanding is a shambles!!!!

Thanks for your reply 😊

SlowDragon profile image
SlowDragonAdministrator in reply toLora7again

Lora7again

What vitamin supplements do you currently take?

When were vitamin D, folate, ferritin and B12 last tested

Can see you have extremely high thyroid antibodies. Presumably you are on strictly gluten free diet?

Lora7again profile image
Lora7again in reply toSlowDragon

I have tried a gluten free diet but i didn't reduce my antibodies. I just saw a consultant who scanned my thyroid and she said I didn't have hashimotos because she has scanned a lot of people with the disease and mine didn't look the same. She said it is a multi nodular goitre. I take vitamin D spray and selenium with zinc. I feel fine at the moment so I think I must be in remission again.

NWA6 profile image
NWA6

Sounds like undermedication to me. Your FT3 results aren’t great. A raise in Levo in April put your FT4 up in the very top of the range but hardly raised your FT3, 35% to 39% through range hardly anything to write home about.

A change in voice is one of my Hypo symptoms and a warning to me that I’m undermedicated.

jamjar67 profile image
jamjar67 in reply toNWA6

Can I ask what medication you take? I am planning to redo my bloods and if no improvement try adding a little bit of T3.

NWA6 profile image
NWA6 in reply tojamjar67

I was on Levo for 10yrs, some months good some not so but steady increase in Levo to 175mcg, I felt good for 6mths on that then Hyper symptoms then the worst Hypo I’ve ever felt (apart from pre diagnosis which was severe aswell)So I googled and educated myself as my Gp and NHS endo were useless and kept telling me there was nothing ‘clinically’ wrong with me. Turns out I’m not a great convertor. So even though my FT’s were in range and my TSH was sometimes around the ‘magic’ number 1 (therefore no professional was interested in my symptoms) I really was always symptomatic in one way or another.

I now take 20mcg T3 and 150mcg x5/125mcg x2. I have my life back. Well actually my life began. I’m 45 now and in hindsight I’ve always be slow/sluggish and found day to day tasks hard. I just thought I was a lazy mare with a depressive personality.

Turns out I’m not at all! I’m lively, smiley and no task is too much effort 🤗

jamjar67 profile image
jamjar67 in reply toNWA6

😊🤗 that’s really hopeful but what a journey for you!! ...., so it seems next step is trialing some T3..., big hopes 🤞🤞 I guess I just wanted it to be easy lol ..., anyway blood test arrived today so I’ll get that sorted tomorrow x

NWA6 profile image
NWA6 in reply tojamjar67

Good job jamjar67. Just remember to get your vitamins and minerals optimal before looking at T3 🤗

jamjar67 profile image
jamjar67 in reply toNWA6

Yes, that’s why I haven’t taken any yet..., Ferritin is slow to rise!! But it’s going in the right direction 😊

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