Hiya, I'm new and worried.: Hi all *waves shyly... - Thyroid UK

Thyroid UK

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Hiya, I'm new and worried.

ScarletWoodland
ScarletWoodland

Hi all *waves shyly*. Sorry this got rather long 😮

Have recently realised due to worsening symptoms that I clearly have a thyroid problem. I'll spare you the litany of classic hypothyroid symptoms and paraphrase to "most of them". The ones that are concerning me though are the ataxia like symptoms. Frequent bouts of pins and needles, numbness of arms, brain fog, poor balance, poor and worsening hand co-ordination... these are scaring me and getting worse.

After 3 days of attempts I finally got a doctor on the phone and told him the above and that I also had a kidney infection. He checked what I meant by ataxia, asked what I did for a living, and said the receptionist would call back with an appointment to have my blood drawn. Then he ended the call.

Part of me thought great, he's taking me seriously and at least I didn't have to jump through the face to face loop of having to explain how I'm still slim (have to restrict to one, small-med meal a day with no snacks, otherwise I gain weight).

The other part thought wait... no family history? No symptom questions? It's all extremely relevant, and is he just not worried about the kidney infection? Will he schedule a face to face after the blood test?

Anyway, I went along and got tested, was pleased to see he'd added quite a few vit deficiency tests to the list incl B-12 (once I asked the nurse with the needle what they were actually testing) and figured okay, I've probably got a decent doc.

Rang up for my results yesterday and was told all "normal" except the thyroid function which tested Borderline:

TSH: 6.61

T4: 20.7

Receptionist relayed the doctor's message at the bottom of the page which just said for me to book a repeat thyroid test in three months. Nothing else.

I was so thrown I just said thankyou and let her end the call. I'd prepared myself for them only testing TSH and T4 and had braced myself for a borderline/subclinical result but really? He had a patient presenting with ataxia (which from what I've read, requires immediate investigation) and wasn't even going to have a face to face? Just... ring up in three months.

So yep, this is where I'm at. What I want is to get an actual face to face with a doc who'll take down my symptoms, family medical history (boatloads of autoimmune disorders including MS on one side and hypo on both for a start), physically look at me, and give me a thyroid antibody test but I honest to God have no idea how to achieve this.

My surgery runs on the system many of you will be familiar with, where you call first thing in the morning to get an on the day appointment, which are all booked up within 25 mins on hold so it's a lottery. Every time I ring I manage to get cut off at least 5 times and have to rejoin at the back of the queue, and they won't let you do it in person. That's not even getting into the part where you have to convince the receptionist that it's urgent, then finally a doctor calls you back to assess you on the phone.

The only approach I can think of is to call, distraught and say I can't wait 3 months with my ataxia getting worse and not knowing why, when my grandmother died very young from MS.

Really tempted to get a private thyroid panel done including antibodies so I have something to wave but is there even any point?

Sorry, this really did get long. Needed to get it out though as NO-ONE wants to listen. Even my mum responed sniffily and 2 days late, saying it was "only subclinical" and not to get worked up until I explained the ataxia stuff.

Really frustrating, especially as I'm the opposite of a hypochondriac; to the point where they've all lectured me multiple times in the past for NOT seeking medical attention. Grrrr.

Thank you so much for reading all the way through this long, slightly panicky, introductory rant 😁. I'm looking forward to getting to know you all.

Scarlet

10 Replies
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Hi Scarlet, I'm in the U.S.,are you using the NHS? I'm afraid if you are counting on doctors you may have a long wait. You can be "on hold" until you are much sicker even though we all agree you are sick enough. TSH is way too high. You are right that you have an autoimmune disease which we have learned quite a bit about. Functional medicine is getting on top of these conditions. We've had several series like The Thyroid Secret by Izabella Wentz, The Broken Brain and Longevity which explain what goes wrong. It comes down to your microbiome or immune system, which is trying to eradicate the proteins that are getting into your bloodstream from leaking out of the gut. Gluten, processed foods, antibiotics or other drugs all combine to start the process. I post videos by John Bergman who is brilliant and lately Dr. Zack Bush feels leaky gut can be healed. They are on you tube. But, for now, your doctor should test all the cofactors and begin treating your hypothyroidism. It really is abominable the position they put you in. The symptoms are terrible and they expect you to live with them??? Ridiculous. Some people have used LDN (low dose naltrexone) for autoimmune conditions like MS. The brain issues are symptoms. You really need nutrients so you need to eat. You do not burn calories as quickly as you should so another reason to start on some thyroid hormone. It is dismal that we have to figure this out ourselves but all you have to do is read more of the posts from the past five years. youtube.com/watch?v=tm4Kown...

SlowDragon
SlowDragonAdministrator

Hi Scarlett

Welcome to the forum

Yes it's clearly not good enough.

First you are legally entitled to printed copies of your actual blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, (EU rules changed after May 25th 2018)

Come back here with the actual results on a new post.

You then have two options, to some extent depends on what the other results show

1) Make a face to face appointment and make a fuss.

2) Just get further full testing privately

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate, ferritin and B12

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 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 are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

If you can afford it, do a private thyroid blood test. Best way to heal body is a very simple diet for a while. (Meat fish veg water). Leaky gut causes a plethora of symptoms which can be relieved by not aggravating your gut. Not a quick healing process though.

Ataxia, pin and needles, brain fog - get B12 checked

Thank you all so much for your replies. A lot of useful information and support from each one of you.

I will definitely look deeper into what I can do for myself nutritionally. Had planned on going GF as soon as I had a result on thyroid antibodies but will probably start tomorrow as I'm pretty certain it's Hashimoto's so why wait.

Things got even sillier today.

I rang the results line to request a print out of my results this morning. The receptionist said she just needed to check something, came back aftet a couple mins and said the doctor would ring me back then decide whether to agree to a print out. Ridiculous of course as I'm legally entitled to them but I didn't say anything as at least it would get an actual doctor on the phone with me.

Waited all day at work for the call and you guessed it, they never called back *headbutts desk*.

Currently deciding whether to ring again tomorrow or just show up and politely refuse to leave until they give them to me.

I did at least get my B-12 result out of the receptionist on the call so that's something...

B-12 = 270

Was rather hoping it would be closer to the bottom, which would push me into deficiency territory when you take my low height, weight and blood pressure (hence lower blood volume) into account. That would have given me a nice, simple and reversible explanation for the ataxia.

Clearly it's not good and I need to supplement but is that low enough do you think? Or just an extra contributing factor?

Will make a new post with my full results when I manage to wrangle them out of them! In the meantime, I'll go and read up on leaky gut and figure out how the best way to get more food down me with my current lack of appetite.

Thank you all again

Scarlet

*laughs bitterly* was thinking for a moment there that I should go home to my parents for a couple weeks and re-register with their doctor... till I saw my mum's thyroid test results. Her levels are just as bad as mine and they've been retesting yearly then ignoring them since 2013. They've managed to convince her she's fine.

Guess that plan's out.

Hi there, such a familiar story. The truth is Dr's know very little about thyroid and tbh care even less. The even worse truth is the specialists often know very little. I was very ill and assumed my dr knew what he was doing. My advice and experience is keep on at dr put it in writing to go on your medical notes that you have (list symptoms) that your surgery have refused to give you your test results, your dr has ordered no follow up and you want a 2nd opinion, keep it to 1 side x A4 sheet or they wont read it but it must say to go on your medical notes. That helps focus them to if you get worse you have already made it clear you are not well and the dr has done nothing.

While you go through the lengthy process of trying to get your dr up to speed take control yourself by private testing if you can. Being your own advocate is less stressful and usually faster to get well but it does not mean letting your gp off with lazy behaviour and sub standard treatment. I got myself well with help from here but i made sure what i did went on my notes and eventually my gp/nhs took over prescribing what i needed. Everything needs to be in writing as it is sad to say gp's tell fibs and your notes may be incomplete (you are entitled to a copy of all your medical history free so ask for it) so it is up to you to see they are correct. Should you ever need to make a formal complaint you will need those letters on your notes to form the basis of the complaint, which is what i did.

Your B12 is low and should be above 500 i think ( my brain is in the bin this morning) but you can check vitamin optimal levels in the files. Gluten free made big difference to me. You can get better but it will be mainly down to you. I was paid by NHS and teaching universities to give talks to final year med students about what happened to me and am shocked how little they know and never met one who was interested in endocrinology, so it really is down to us till they catch up xx

Thank you this is really helpful advice! I'll definitely write that page out as you suggested.

Managed to get a full print out of my results today after 2 phone calls then just showing up in person. Will make a new post with the results but it's definitely been enlightening.

Thanks again.

Scarlet

Not sure where you live but a few years ago I realised that I was trying to communicate with a less than knowledgeable idiot. So I found an endocrinologist that specialised in thyroid NOT Diabetes! (London teaching hospital)

I made a private appointment (£250!!!) Exellent investment and he transferred me to his teaching hospital (NHS). Give it some thought!

It's quite terrifying how little they really know. Heard they only get 3hrs of training on the thyroid while qualifying.

I knew they were horribly ignorant on skin conditions (my childhood gp was also a dermatologist and flat out told me so) but figured that was down to it being a more minor concern area. Makes you wonder how much they know about anything tbh.

£250 seems like a bargain, even to this skint, PT minimum wage worker! Will give it some thought if things continue as they have.

Thank you

Scarlet

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