Not sure...

Last summer I started to feel a bit ‘odd’; my balance was off, I started getting numb hands and feet, I was constantly drained (not tired as in sleepy but physically fatigued), pins and needles, jitters, dizziness when standing and the list goes on. I am a keen marathon runner so thought the fatigue was just due to having overdone it a bit and discounted the other symptoms as a side effect of the fatigue. But my symptoms starting getting worse and by November the jelly legs were so bad I was struggling to get about or even stand some days. My symptoms seems to match up with hypothyroidism, but when the doctor tested my TSH he said it was normal (2.68, range 0.3-4.2) and I was probably just stressed so sent me home to ‘think about’ anti-depressants. I noticed by B12 was a little low but when I questioned this was told it was still ‘normal’. I noticed the symptoms for B12 deficiency are almost identical to those for hypothyroidism and given the doc had said that it wasn’t my thyroid i convinced myself this was the answer. A few weeks later out of desperation I started self-injecting B12 and gradually my symptoms reduced and I was more mobile. But they are still there, just less extreme, particularly the poor balance (I feel like I’m walking around on a boat), the dizziness, overwhelming fatigue and numb hands and feet. My throat has also started feeling ‘clogged up’ in the last month or so…

The local GP wouldn’t consider any other options so I’ve been to see a private neurologist who agreed the B12 had been a bit low but the injections had rectified that so no longer an issue. He also did a scan to rule out MS which it did. And he too started talking about depression/stress again! He tested my Thyroid initially and on my return, TSH and T4 this time, said it looked normal and reluctantly referred me to an endocrinologist who is testing these again plus T3 (results pending).

My results in Jan were:

TSH 2.76 (0.27-4.20)

Free T4 17.6 (12.0-22.0)

My results in early April were

TSH 2.06 (0.27-4.20)

Free T4 13.3 (12.02-22.0)

Long intro over! Do these look normal and I’m actually barking up the wrong tree or could this still be the reason for my symptoms?

I’m still waiting for my results back from the endo but feel like I need to be better prepared for my follow up with him. He said whilst my T4 was fine it was unlikely anything is wrong. I just don’t know what to do, I was running marathons this time last year and now I can barely get up the stairs without feeling like I’m going to pass out! I do not feel depressed or anxious and don’t want to resort to anti-depressants if this may be a genuine physical problem. Any advice would be welcome!

Thanku Abi

[greygoose]

The only reason they say that your results are 'normal', is because they are 'in-range'. But, they're only looking at part of the story. They really don't know much at all about your thyroid without seeing the FT3 and the antibodies - TPO ab and Tg ab. And, actually, your TSH is not 100% 'normal', it shows your thyroid is struggling a bit.

What time of the day did you have these tests? Were they all fasting? The best time to do them is early in the morning, after having fasted over-night.

Are you still having B12 shots? Do you take a B complex every day? B vits all work together and need to be kept balanced to work properly.

[Hidden in reply to greygoose]

They were all done in the afternoon, an hour/ 2 tops after lunch, will that make a big difference to the results?

I’m a veggie and what with the heavy exercise (altho not lately!) I supplement quite a lot, I take a multivitamin and picked the one that’s highest in the B’s, I take magnesium, folate, iron, vitamin d, and a pro biotic... I’m still supplementing the b12, I experimented reducing the frequency but my symptoms deteriorated again...

The endo didn’t mention antibodies so I should probably request that test too to make sure..

Thanks for your help 😃

[greygoose in reply to Hidden]

It certainly would make a difference to your TSH, but impossible to say how much.

We don't recommend multi-vits on here, for several reasons. But, if your multi contains iron, you will not be absorbing any of the vitamins. Iron should be taken on its own, well away from everything.

Being veggie would probably explain your low B12. So, you will need to continue with the shots.

[Hidden in reply to greygoose]

The iron is a separate tablet but I take them all at the same time, I will stop doing that thanks for the tip!

So with my tsh not looking quite ‘normal’ is it worthwhile my challenging that with the doctor? Or shall I just wait and see what this latest set of tests says including the T3 and antibodies?

Thanku

[greygoose in reply to Hidden]

I really don't think it's worth challenging the doctor until you have all the right tests. If you have high antibodies it might make a difference to you getting diagnosed, according to the Dr Toft booklet. But, you have to remember that most doctors will tell you that antibodies are irrelevant - they aren't - and that you're not really hypo until your TSH is over 10 - you are, you're hypo when your TSH hits 3, but doctors in the UK would be horrified at such an idea. And, of course, you need to get tested early in the morning, to see just how much difference that makes to your TSH. It can often be quite a battle to get diagnosed.

[Hidden in reply to greygoose]

Ok thank you I will see what the next set of results say and make sure they include the antibodies one!

Is the Dr Toft booklet available online? It sounds like it would be a useful read!

[greygoose in reply to Hidden]

I'm afraid I don't know anything much about the booklet, but I think it's available in pharmacies, but not on-line. If you can't find it in the pharmacy, it would be a good idea to ask a new question, I'm sure someone can help you.

[Hidden in reply to greygoose]

Ok thanks 😃

[Hidden in reply to greygoose]

Just pulled up several books by Dr Toft about thyroid on amazon.com (US). Maybe they are on UK amazon site. Hopefully this helps. xx🐱 irina

[Hidden in reply to Hidden]

Thank you I found one on amazon for 7p! What a bargain for such important information, I might buy one as a gift for the endocrinologist, maybe he will get the hint he needs to do some more reading himself!!

[Hidden in reply to Hidden]

That's what I would do!🐱

[Greybeard in reply to Hidden]

I got mine from Amazon. "Understanding thyroid disorders" dr anthony toft

[Hidden in reply to Greybeard]

Oh great thank you!

[SeasideSusie Remembering in reply to Hidden]

Check your multivitamin tablet. Most of them contain iron, quite a few contain iodine and calcium and neither of those should be supplemented without testing and only if found to be deficient. The usually low levels of the other active ingredients wont help much, and quite often they are the least absorbable form anyway.

Did you test Vit D before supplementing? You should otherwise you wont know if you need it or how much to take. Do you take D3's other important cofactor, besides magnesium, - Vit K2-MK7?

[Hidden in reply to SeasideSusie]

I will check the multi-vit for iron thanks good tip! I’m fairly certain it’s doesnt have K tho, I will check that too. The doc in November said vit D was low, he tried to attribute it to the cause of my fatigue but I think it was more a result of it where I’d barely been outside for ages. Ive never been low on D before as usually I’m outside running a lot! He started me on a really high iu tablet for 5 weeks then I started on a spray when they finished..

Thank you

[SeasideSusie Remembering in reply to Hidden]

Do you know your current Vit D level so that you know how much D3 spray to take? It must have been deficient I would think for our GP to prescribe.

You can get a combined D3/K2-MK7 spray from BetterYou.

[Hidden in reply to SeasideSusie]

It was 36nmol in early December, ref range being <30 deficient, >50 adequate. I haven’t been tested since he just said to take the prescribed course then carry on taking an off the shelf one from then on...

thank you

[SeasideSusie Remembering in reply to Hidden]

You really need to know your current level to know that you are taking the correct dose of D3 now. I would suggest testing with City Assays who do a fingerprick blood spot test for £29 if your GP wont retest

vitamindtest.org.uk/

[Hidden in reply to SeasideSusie]

Thank you for that advice that sounds sensible, i’ll do that straight away.

Thank you

Abi

[SlowDragon Administrator]

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

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.

All thyroid 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, GP will be unaware)

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 hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get antibodies tested.

Also if you have raised antibodies you definitely don't want a multivitamin with iodine in. Personally would avoid multivitamins

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

[Hidden]

Thank you I will get some private tests done if my next set don’t give me any answers so I can control the time of day these are done.

Thank you for the Advice re vitamins too, I have been severely iron deficient in the last couple of years and have several food intolerences so I guess it may all be connected...

Thanks again

Abi

[milkwoman]

By any chance are you missing the outer third of your eyebrows and/or eyelashes? Also, are your reflexes slow?

My blood results never showed I was HypoT but thank goodness I found an endo who diagnosed me based upon my symptoms. He saved my life and my sanity (I also had docs wanting me to be an antidepressants - I refused knowing I was NOT depressed!)

For me, my journey did not end with a HypoT DX. Still not well I was persistent on finding out what was wrong. It took a lot of convincing and one fluke positive test to get me to a rheumy who, at first, told me I was “fine” but then, had to eat his words when my blood results showed I had SLE and Sjogrens. I was physically fit and active (but felt like crap all the time) so it took a lot to get people to really listen to me. That old adage “you don’t look sick” thing.

Stick with what your gut tells you. Only YOU know yourself best. Keep all your results and put them in a format where you can look for trends. Research everything and ask lots of questions. Keep track of how you are feeling on a daily basis.

Best of luck!

[Hidden in reply to milkwoman]

Thank you for your advice, i am trying to stick with my gut I know I’m not depressed but it’s so hard to face off the professionals when you feel so weak and dreadful! I have been keeping a log of how I’m feeling, though it’s starting to be a bit of a depressing read in itself!!!

The outer third of my eyebrows hasn’t changed particularly but I’ve been losing quite a lot of eyelashes in the last few weeks and they are thinning pretty quickly, I’ve also notice when I comb my hair there’s a big clump in the comb whereas previously it was just the odd strand ☹️

What is SLE and sjogrens if you don’t mind me asking? Is that connected with Hypothyroidism?

Thank you

Abi

[milkwoman in reply to Hidden]

It can be overwhelming at times - I completely understand! In the beginning I thought I was going crazy and actually questioned whether or not I was making it all up. Of course, I wasn’t and I thank the stars for the support of my husband who would go to appts with me and tell the doctors to listen to me! He would describe to them how I “used to be” and then “how I am now”. It was so nice to have someone in my corner! Do you have someone who can do this for you?

Keep track of the eyelash and hair loss - definitely a connection with HypoT. Also, when you see a doctor next, ask them to check your reflexes - especially the ones at the feet. Mine are slow which my endo says is a HypoT symptom. It can also track how my meds are working and if I’m under medicated.

SLE is Systemic Lupus Erythematosus, or simply lupus. It’s an autoimmune disorder where one’s own immune system attacks normal tissues. I also have Sjogrens Syndrome, another autoimmune disorder where the immune system attacks mucous membranes resulting in dry eyes, mouth, dental issues, nose sores, etc.

I’m stunned I don’t test positive for Hashimoto’s (autoimmune hypothyroidism). Doesn’t necessarily mean autoimmune isn’t the cause. My endo is great and basically treats my HypoT as if it were Hashi’s because I already have two AI conditions.

Hang in there and keep fighting for your health! This site is FANTASTIC - the experiences, wealth of knowledge and support is unsurpassed!

Hugs.

[Hidden in reply to milkwoman]

Thank you I will definitely include it in my next conversation with the endo and will keep persisting! It’s good to know others have had success in getting treatment so hopefully I can identify what it is and start treating it soon.

I will definitely keep reading on here too there is so much information and everyone seems so kind wanting to help others.

Hopefully I will get some answers soon!

[SlowDragon Administrator in reply to milkwoman]

Apparently it's perfectly possible to have Hashimoto's, but never get high antibodies

thyroidpharmacist.com/artic...

Good you found a great endo.

So many, only look at blood tests and never examine the patient

[milkwoman in reply to SlowDragon]

Great info here - some I knew, much I did not!

[Hidden]

Hi again,

I’ve fiiiinally had my blood tests back from the endo! I think I mentioned before these were taken in the afternoon a little time after lunch..

I’ve paid for some separate tests which I had done last week in the morning before eating anything but am still waiting for those back.

The endo results are as follows, any help interpreting would be gratefully received!

Thank you

Abi

TSH 2.15 (0.27-4.20)

Free T4 13.7 (12.0-22.0)

Free T3 5.4 (3.1-6.8)

Cortisol 144 (no range given)

Andrinocorticotrophic hormone 14.6 (7.2-63.3)

Renin (active) 6.9 (Recumbent <20 Standing 5-40)

It doesn’t look like he did an antibodies test unfortunately but that should be part of the other tests I’ve paid for which should be back soon..

Any help would be wonderful thank you, I’m still feeling much the same!

Abi

[Tiffanys1]

Hiya I’m going for blood test tomor the doctor has only ticked Ferritin and TSH and full blood count , I’m same very all over place and very tired, up and down , crying a lot, drained , should I be having TOTAL T4 checked also and anything else as recently had to come off my hrt after 14 years

[Jazzw in reply to Tiffanys1]

Tiffanys1 , I’m afraid your post won’t get seen here. Best to start a brand new post of your own.

[Tiffanys1 in reply to Jazzw]

Oh thank you new to this didnt realize nobody could see

[Tiffanys1]

I heard I may have low iron and b12 and need selenium xx

[Hidden in reply to Tiffanys1]

I’m new to this so others will hopefully reply to clarify but I think you need Free T4, Free T3 and antibodies testing as well.

A vitamin panel is useful as well I understand, as the symptoms for B12 deficiency are almost identical and this can be interlinked with iron and ferritin...

Good luck 😃

[Tiffanys1]

Thank you , so confusing isn’t it , I’ve had this for years but didn’t realize how much it effects our daily lives xx