Home from holiday. ..: Hi all. Home from Greece... - Thyroid UK

Thyroid UK

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Home from holiday. ..

Shenka profile image
Shenka

Hi all. Home from Greece after going on holiday newly on levo just after hypothyroid diagnosis. When I walked off the plane early hours Thursday I felt really unbalanced and unstable on my feet. Not drunk lol! Had to drive home so apprehensive but took it easy and made it safely. Balance problems since. Had appointment Friday with GP for blood results to check for autoimmune issues. She said I have autoimmune thyroiditis as she anticipated. I asked her was that hashimotos and she said no. This confused me as I thought they were one and the same. For my balance issues I got a steroid nasal spray and should go back after a week if it hasn't resolved itself. Really sore at either side back of neck at mo and balance issue slightly improved.

62 Replies

Which antibodies did you have tested?

Shenka profile image
Shenka in reply to greygoose

Well for immune system attacking my thyroid. ..whatever that would be. Sorry for being clueless.

greygoose profile image
greygoose in reply to Shenka

You didn't get a print-out of your results, did you. Always ask for a print-out so that you know exactly what was tested, and exactly what the result was.

The one most commonly tested for is TPO ab, which is for Hashi's. Doctors call Hashi's 'Autoimmune Thyroiditis'. I don't know if they know it's the same thing, and chose to ignore it, or if they're really that ignorant.

However, given your doctors reply, I wondered if perhaps she'd tested for Grave's. I don't think they have another name for that, but it is autoimmune.

Shenka profile image
Shenka in reply to greygoose

I thought it was the same thing from what I'd read here. She was very adamant that there was a distinction between immune system attacking thyroid and hashimotos. Re Graves I thought that was hyper? Lot to learn. Obviously.

greygoose profile image
greygoose in reply to Shenka

Graves is hyper, but you didn't say you were hypo, so I was just guessing.

Your doctor obviously has a lot to learn, too. That's what Hashi's is : the immune system attacking the thyroid. I wonder what she thinks Hashi's is...

Shenka profile image
Shenka in reply to greygoose

So do I lol. I say lol but it isn't funny at all to put your health in the hands of a GP who doesn't know enough about your condition. When diagnosed she said my bloods showed high cholesterol which should respond to levo but the high blood pressure was nothing to do with it. On Friday she said blood pressure was improving slightly and it should come down with the levo. I was feeling so poorly and discussing the balance issue that the consultation was over before I had my head around things. I think I did ask for a printout but she interpreted it as a printout about autoimmune thyroiditis.

greygoose profile image
greygoose in reply to Shenka

Oh dear. You've got your work cut out with that one! You've really got to learn about your disease, or your doctor is going to make a right pig's ear of your health!

Shenka profile image
Shenka in reply to greygoose

She is a new young Dr in our very small practice of 2 men. Seemed on the ball at first but I thought that because she had made a point of ringing endo at hospital for advice on dosage.

greygoose profile image
greygoose in reply to Shenka

She range the endo because she was totally out of her depth. The younger they are, the less they know about thyroid.

Shenka profile image
Shenka in reply to greygoose

I thought she was on the ball. Obviously not.

greygoose profile image
greygoose in reply to Shenka

Obviously not. :(

Shenka profile image
Shenka in reply to greygoose

Trouble is I don't think very highly of the male GP's either.

greygoose profile image
greygoose in reply to Shenka

There aren't very many GPs that know anything about thyroid.

Shenka profile image
Shenka in reply to greygoose

I am starting to understand that g.

Diddums profile image
Diddums in reply to Shenka

Hence the populity of this Forum methinks. Like you Shenka I was recently diagnosed after consultant(annual check on old illness) advised I see an endo, Consultant wrote to GP and confirmed 'the rest of bloods are entirely normal' As my regular GP is only in surgery two days a week I saw a younger man who said (very quietly) 'we are not allowed to test for T3) and "we haven't needed an endo yet"My reg GP said 'he was keeping an eye ' but still allowed my readings to be around 8.0! On advice of endo I started 50mcg on Levo and like you expected my balance unsteady problems to right themselves but they haven't My health was really suffering and as I had renal TB/maningitis some 16 years ago I thought maybe this condition would stop! BUT it hasnt BUT am taking control and trying to educate my GP too. I have joined Thyroid UK (intend to go to Conference on 30th ) Keeping a log of exercise I am trying and I am walking to try and improve my Centre of Grvity (COG ironically) and doing deep 'Yogic' breathing plus balance exercises to help improve stability .

I have recently had a *Fasting blood test (30/8) via this Forum and my readings now are:

TSH...........4.27

Free Thyroxine........17.6

Free T3 (which NHS is stopping) is..........3.3

Seems I mayt beed an increase in medication buyt we'll see what next reading says

I am due to have another (GP)blood test on 20/9 when they are going to test for Hasimoto's too , This blood test will be *fasting too as advised by Forum that taking LEVO prior to test would skew results (usually against you) and stayed off Levo and food ,had an early test and then took levo before breakfast! Now looking at diet!

TOTAL EMPATHY!!!

Diddums profile image
Diddums in reply to Diddums

Sorry for any typos Tired, with gritty eyes and unbalanced is not conducive to keyboard skills!

Diddums profile image
Diddums in reply to greygoose

Had a Blue Horizon blood test and assume these results are ok Dr comments were interesting too.

They said:"The TSH is slightly elevated. If you are already taking a form of thyroxine,it is possible your dose is too low or that you have forgotten to take it on occasion. It may ne that an increase in does is in order-if adjusted it would be sensible to repeat Thyroid Function testing on aroud 2 months time. If you are not taking throxine,and this is the first time TSH has been noted to be high, It is possible that (non-thyroidal illness) or other medication effects are the cause of the elevation. It may be that underactive hypothyroidism (underactive thyroid gland) is about to develop. In these scenarios, it would be advisable to repeat Thyroid function tests in 3 months time. I suggest undertaking this repeat test sooner if symptoms develop."

TSH...........4.27

Free Thyroxine........17.6

Free T3 (which NHS is stopping) is..........3.3

Was 7.4 when started on Levo then 5.4 at first (and only)GP blood test (some time later - 10 weeks!) Have since asked GP if standard time is "6 months" He waffled on about blood tests done so far (12)and seemed surprised to be told I only had one. And have only got 4 copies so far........can I request backdated coipies?

helvella profile image
helvellaAdministrator in reply to Shenka

When Dr Hashimoto did his original research, in every case he examined a thyroid, it had some swelling - a goitre - it was goitrous.

It became usual to require a goitre for diagnosis of Hashimoto's. Over the years, it became clear that the same disease process underlies autoimmune thyroiditis whether or not there is a goitre. Hence, to many medics, the term can be applied equally with or without a goitre.

For reasons that are as obscure as they can be, UK medics seem to flee the term Hashimoto's. Indeed, they flee even when it is goitrous.

In this age of transworld communication, boundaries on things like disease names cannot be maintained. We are all in the same online world. It is ridiculous to attempt to maintain what looks to me like a false distinction. Let us call it Hashimoto's (or another name) and be done with it. But for goodness sake, stop arguing and telling patients they are wrong.

greygoose profile image
greygoose in reply to helvella

Ahh they just like telling patients they are wrong. If it wasn't that, it'd be something else. :(

helvella profile image
helvellaAdministrator in reply to greygoose

They love seeming to know everything, and hate being found ignorant. Then they prove their ignorance in 24 carat gold. :-)

greygoose profile image
greygoose in reply to helvella

Exactly! lol

Lol!

Diddums profile image
Diddums in reply to helvella

Should have seen my GP after last apportionment. If a picture paints a thousand words

rhultra profile image
rhultra in reply to helvella

Iodine deficiency creates thyroid issues and other autoimmune problems

helvella profile image
helvellaAdministrator in reply to rhultra

Iodine excess causes thyroid issues.

Not sure what you are trying to say there? Do you think it should, or should not, be called Hashimoto's?

rhultra profile image
rhultra in reply to helvella

All that has been said about Iodine is incorrect go check out Iodine deficiency and high dosing to overcome Thyroid issues....I'm currently feeling better by high dosing against current medical advice..But every one is Iodine deficient this is what causes thyroid issues..Many leading practitioners go against current medical opinion.. Magnesium, selenium, all these essential elements are lacking in our toxic life pesticides in our food ect. Iodine.is essential for all cells in the body do research on you tube try it out .listen to your body I have many health issues doctors say they can't cure only treat symptoms with more drugs ,A lot of my symptoms have gone since Iodine and magnesium and change in diet are now producing results for me that the doctors could not deliver

helvella profile image
helvellaAdministrator in reply to rhultra

Given where you responded, I do not see why you launched into an iodine discussion.I repeat:

Do you think it should, or should not, be called Hashimoto's?

"All that has been said about Iodine is incorrect" - is a HUGE claim.

If you are going to make such huge claims - provide some specific references to back them up.

I would be fairly sure that some people get plenty of magnesium and selenium from their ordinary diets. Many others do not. We need to be very careful when making black-and-white categoric claims given that we have people living around the world here - with a huge variety of very different diets.

rhultra profile image
rhultra in reply to helvella

Plenty of information and results available regarding Iodine if you care to check out latest information..But if you prefer to remain a drug taking thyroid patient thats fine also but many other people may benefit from doing some research and testing out the Iodine claims. Thyroid problems are skyrocketing around this toxic world.Some even have to have thyroid removed..But even then you must supplement with Iodine as this is essential for cells..Big Pharma cant patient Iodine so they they tell doctors it's bad for people..This info is wrong..But don't take my word do plenty of research on the benefits of Iodine..or remain in a world of indifference and pain..The medical profession won't make your Thyroid issues go away but maybe Iodine will.

greygoose profile image
greygoose in reply to rhultra

Are you selling iodine, or something? Speaking as one who has tried it, and suffered for it, I object to people making dogmatic claims like yours. You could do an awful lot of harm!

Diddums profile image
Diddums in reply to helvella

My GP said (PROUDLY)'we test a lot for Hasimotos here " to which I asked "so you find Thyroid problems are quite prevalent here' GP was not happy!

Clutter profile image
Clutter in reply to rhultra

Rhultra

Not everyone is iodine deficient and not all thyroid issues are caused by iodine deficiency.

Low B12 can cause poor balance - called ataxia. Do you know your levels of B12 - Folate - Ferritin - VitD ?

What dose of T4 are you taking ?

Shenka profile image
Shenka in reply to Marz

I am just on levothyroxine...50. All new to me just before 2 weeks holiday. What do you mean by what dose of T4? I have no idea of any vitamin levels but the balance problem was definitely related to the flight as I was fine before.

Marz profile image
Marz in reply to Shenka

T4 is Levothyroxine.

thyroiduk.org

The above link takes you to the main website for this forum where you can read up on everything thyroid - including the need for good levels of vitamins and minerals .....

Shenka profile image
Shenka in reply to Marz

Oh..T4 is levo......silly me. It is all so new to me and confusing when your head feels all over the place.

Marz profile image
Marz in reply to Shenka

The link I posted will help you understand things. We have to read and learn for ourselves to find wellness ..... I was diagnosed at 59 in 2005 and I am still learning ....

Shenka profile image
Shenka in reply to Marz

Thanks Marz. You know my mum died last year at 102 and her mum lived to 106. It has been a shock to me to have a health condition like this.

Nanaedake profile image
Nanaedake in reply to Shenka

You can live well with it so long as you don't let inexperienced or ignorant doctors mess you about. They probs get about an hours training on thyroid and have no idea how it affects patients lives. Make sure you get those test results and post here so everyone can help. Include the laboratory ranges because they vary from lab to lab.

Shenka profile image
Shenka in reply to Nanaedake

When I go for blood tests I will ask the nurse for printouts. Thanks.

shaws profile image
shawsAdministrator in reply to Shenka

All blood tests for thyroid hormones have to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take afterwards.

This allows the TSH to be at its highest as that appears to be the only thing doctors take notice of and they may adjust dose unnecessarily if you don't follow this procedure. :)

Always request a printout of yourreesults with the ranges. Ranges are important as labs differ in their machines.

Shenka profile image
Shenka in reply to shaws

Thanks. I will follow your advice.

Marz profile image
Marz in reply to Shenka

Shenka - please be pleased you have at least been diagnosed and can learn from all the knowledgeable people here. My Mum died without a diagnosis - and how I wish I knew then what I know now ....

Naomi8 profile image
Naomi8 in reply to Shenka

It is common for an infection to be driven into the inner ear by the effect of a pressurised cabin.Did you swim by any chance while in Greece?A friend getting off a plane after a holiday in Greece had such a bad balance problem he actually fell over at the bottom of the plane steps when he let go of the hand rail.He needed antibios for an infection.I have had inner ear problems after flights.Arriving in Majorca & driving around the roads in the north of the island,I had to spend a whole day in bed,I was too giddy to get up & this made me feel very panicky.

Shenka profile image
Shenka in reply to Naomi8

I swam in Greece but head out of water swimmer lol. I have had a problem with left eustachion tube for a few years since a heavy cold. I just don't run to Dr's. Put up with things. Stupid I realise now.

Kodai profile image
Kodai in reply to Shenka

Hi Shenka. Your balance problem could be caused by a viral infection called Labrynthitis. It affects the inner ear and causes dizziness, nausea and loss of balance. Should clear up with abtibiotics but may take a while - few months - for full recovery. Onset is often after a plane journey. I've had it and it's horrible! Hope you feel better soon.

Shenka profile image
Shenka in reply to Kodai

Thanks K. The pain either side at back of neck is quite intense. I'll have to make another appointment soon if this doesn't improve.

Treepie profile image
Treepie in reply to Shenka

As Marz says lack of B12 can cause balance prolems .But it is important to have the vitamins mentioned by Marz tested before you supplement. You need the results and the ranges which are shown in brackets .If in range the doc will usually say "normal" but it may not be optimal for you!

Blue Horizon and MediChecks provide comprehensive blood tests from finger prick you can do at home or by a nurse taking blood at a private hospital : BMI or Spire.

You must read widely to learn about your illness.

thyroidpatient1 profile image
thyroidpatient1 in reply to Marz

I had balance issues as well but since I stated taking 3000 (IU?) Vit D3 and a high dose of iron, the balance issues went away. Hope you find a cause for your symptoms!

SlowDragon profile image
SlowDragonAdministrator

You should have blood tests to recheck levels 6 weeks after starting Levo. Also ask that at the same time your vitamin D, folate, ferritin and B12 are checked

These are often low when we have Hashimoto's (which in UK they only ever seem to call autoimmune thyroid disease)

As others have said ALWAYS get copies of blood test results, actual figures and ranges.

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

Yes lots of good advice on the Thyroid Uk site who run this forum and are also recommended by NHS Choices for help with thyroid disfunction. Shout out if anything you don't understand and you will get help. Lots to learn but no one is going to test you on it or insist who must take it all on board at once. Start with the do's and donts re taking your meds and get the basics then build up from there. Sometimes when we are new we get loads of suggestions but try one at a time so you know if it is helping. Difficult to tell when start many things together. If you need to supplement things then again start on one and don't add in another until a couple of weeks have passed in case something disagrees with you. At least then you can find the culprit Good quality supplements are a drain I'd you get them all at once as well so staggering taking them helps financially as well.

Hope progress goes well.

I too have a young female GP, she does seem to know a little bit more than yours but I have found she is willing to listen, she also encouraged me to learn about my condition.

Well that chicken had come home to roost as I have learnt the gentle art of GP manipulation by presenting well reasoned counter arguments and produce evidence to back it up, which so far has successfully brought her round to my way if thinking and I am finally feeling well.

Always get a copy of test results including ranges, you can get your electronic record turned on to save hassle or contact reception, you are legally entitled to them. Post results before your GP appt and experienced members can help you interpret them and suggest what you need to ask about or hiw GP may react until you get more experienced. NEVER accept results are normal, fine , ok or GP will contsct if an issue, this just means your results are somewhere in the range but we all have our own optimal numbers we need to find.

Hi i had the same autoimmune thyroid 4 years ago its under control now the weight I lost was unbelievable for the past year I've been OK But now I'm I got diagnosed 2 months ago with osteoporosis and Osteoarthritis I'm in a bad way caused by trauma to my at work I'm only 50 and feel like 75 hope you get thyroid under control take care x

Hi Shenka

Just a thought, its possible that you have some blocked lymph glands and/or sinuses from the chemicals used in planes and the different air pressure, also from the sea if even if you kept your head above it as infections can be airborne. If you google lymph glands you should find some diagrams of their pathways and the pain at the back of the neck sounds like it could well be along them. I found a really helpful video when I googled of someone showing how to clear the blockages and when I tried it relieved the pain and stiffness immediately. I don't have her name to hand because I've changed computers but I'm sure you can find it with google.

Shenka,

It occurs to me that you have a golden opportunity to 'train' your doctor!! If as you say she is new to GP services there's a good chance she hasn't been jaded or encouraged to accept the formal thinking that many of us have found with our established doctors, like Phoenix605 said, every single time you go to the doctor make sure you are armed to the teeth with information for her. You might even want to go as far as getting the email address for the surgery and occasionally sending information to her under the guise of 'helping' her to become better informed so that she can recognise the differences between Graves and Hashi's or even being able to spot a goitre that might turn out even worse! I'm really lucky in that one of the nurses (and I'm using the word 'lucky' ironically here as I would not wish thyroid problems on my worse enemy!) suffers from Hashi's which means that the doctors in my surgery are more clued up about the attendant problems that being hypo/hyper can bring you. Hopefully you will be able to enlighten your doctor along the way with you👍🏾

LAHs profile image
LAHs in reply to LiTai

Yes, LiTai, I was thinking that too. I found that my doctor (the GP not the Endo) became very interested in Thyroid conditions after I started reading up on the subject and asked him many questions. I diddled around with my dose for two years, he kept track of my doses and took blood tests whenever asked just to see what reacted to my different doses. That way, I became very well (and lost weight!). I suppose we cannot expect every doctor to go to that much trouble for every patient, that is a big problem and I think the answer is that we educate ourselves in the subject and just request blood tests from the docs - docs should at least do that. It is necessary that we fire up their curiosity so that they are interested in our condition - new, young doctors will probably still have this enthusiasm for extra knowledge.

I wonder if you were on the same Jet2 flight as me? 22.40 from Rho to STN, I felt the same but put it down to tiredness, three other flights last week. And I got my period when I reached home 3 hours later. I drank a lot of Pepsi, tea and water on the flight. I'm on 100mcg T4 & 25mcg.

My joints were more achy and I haven't been able to shake a cough for two weeks. Throats not sore just phlegmy

Shenka profile image
Shenka in reply to EbonyEvans

Hi Ebony. My flight was Greece to Belfast but like you I put it down to tiredness. Hope you're soon feeling better. I was in Tesco today and walking up and down aisles with the shelves passing either side I thought I was going to throw up. I doubt if steroid nasal drops Dr gave me will solve the problem. ....lol

levelslass profile image
levelslass in reply to Shenka

Hi Shenka possibly nothing to do with your thyroid. More likely to be problem with inner ears ie labyrinthitis or worse a benign brain tumour called an 'acoustic neuroma' which will affect your balance and make you feel sick (I have this). Would suggest you go back to your GP, let him/her examine your ears and send you to ENT specialist. Are you experiencing any hearing loss on one side or both sides. When you turn without using your eyes ie if someone calls your name and you turn fast do you experience giddiness and nausea? Labyrinthitis is easily treated with tablets. Good luck

Thanks LevelsLass, I love having a name up for suggestion when I'm off to my gp. Makes it so much easier. I shall research as well. 💜

Check out youtube.com for Iodine deficiency and thyroid problems

Bad today

Just feel in a really bad place today. Was crying earlier. Sertraline has kept me stable for years. Now I just feel hopeless.

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