Bit of a Rant : Hi As part of my ongoing... - Thyroid UK

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Bit of a Rant

Sparklingsunshine profile image

Hi

As part of my ongoing dizziness investigations I had a whole raft of blood tests taken mid June. FBC, B12, folate, ferritin, TSH, FT4, electrolytes, kidney function and liver profile. All OK, except still under range TSH, tragic FT4, really dire folate. I have posted about these, my folate was particularly bad at 3.4 ( range 3-20).

My ferritin was slightly elevated and my calcium was below range so I was told to have them repated. I got an early morning draw because my surgery decided for reasons unknown, to repeat all the blood tests even the normal ones 😒.

Anyhoo, I managed to get a cancellation in for last Wednesday, I did see the GP had requested FT3 as well this time. So got a pre 9am fasting appointment. My hospital uses a booking system for appointments and the usual wait time is 2-3 weeks minimum.

I was hoping the results would be back quickly like last time (they were uploaded online the day after) but here we are Monday PM and no results. I've chased them up, both with the pathology lab in case they got lost or needed to be redone in case the sample got contaminated or spoiled. They've said the results are there but they cant give them to me. Must be via GP surgery.

I've phoned the surgery who can't confirm they've had them. They need to be downloaded from the path lab system by GP, checked, and then put on the patient access system. Apparently they had 3 GP's sick on Friday, 2 are off today. Maybe discontinuing mandatory facemasks in the surgery might not have been the best idea, was on the tip of the tongue. Mine no longer require them.

I'm just frustrated that everything takes so long. Been feeling really rough lately, so tired, low on energy and dizzy to boot. I dont know if the low folate, calcium and low FT4 are contributing to feeling so crappy. Even once the results are in I know that if they're abnormal I'll have a long wait to speak to a doctor, sigh. Sorry for the rant.

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Sparklingsunshine
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18 Replies
Jazzw profile image
Jazzw

Rant away, that’s really crappy. Sending a big hug. Every extra day of waiting feels like a week when you feel rubbish, doesn’t it?

As for the all stopped wearing masks thing—yep. I finally succumbed to COVID on Saturday after managing to avoid it for nearly 2 and a half years. I’m feeling pretty dreadful, to be honest. 😢 (My turn to have a little rant, sorry!).

My workplace did away with social distancing several months ago and now, about 5 of us in my team all now have COVID. We’re going down like dominos. 😩

Here’s hoping someone gets their act together and downloads those results for you soon. xx

Sparklingsunshine profile image
Sparklingsunshine in reply to Jazzw

Hiya

Hope you're feeling better soon. I've managed to avoid getting covid as well but I'm sure it's just a matter of time. My sons both work in the NHS and were still wearing masks at work until a couple of weeks ago. Pretty sure they'll be told to put them back on sharpish. Personally it seems particularly daft in health care settings not to expect patients and staff to wear them.

Yeah I've had 3 months of feeling very crappy, getting really bored of myself now. And I wish I could say I'm not impatient but I'd be lying if I did. Thanks for the reply and best wishes on a speedy recovery 😊

Jazzw profile image
Jazzw in reply to Sparklingsunshine

Thank you—you too xxx

Jazzw profile image
Jazzw

When I was in Spain a few weeks ago you were still expected to wear a mask in taxis, on buses and in pharmacies. It seems crazy that we’ve done away with all protective measures.

shaws profile image
shawsAdministrator

I'm sorry you have Covid test positive after avoiding it for some time now and you now have symptoms.

I hope it resolves quickly for you. I did have a Covid positive test but thankfully I didn't develop any symptoms at all.

Sukeeblue profile image
Sukeeblue

Just a thought on your dizzy spells do you have low blood pressure? I do myself. I try to have a good diet with hardly any salt which I feel at times causes my dizzy spells. Speak to your doctor if you do have low blood pressure. Hope your problem gets sorted.

Sparklingsunshine profile image
Sparklingsunshine in reply to Sukeeblue

Hi

No blood pressure is normal. Its not really dizzy spells but almost constant feeling unbalanced and off. But it's not spinning like vertigo.

Brightness14 profile image
Brightness14 in reply to Sparklingsunshine

It maybe something to do with your ears, balance etc.

ICE187 profile image
ICE187 in reply to Sparklingsunshine

Hypothyroidism has affected my ears, triggering lightheadedness, unbalanced feelings. I get this oozing/icky sensation in one ear along with a higher pitched sound from voices.

Brightness14 profile image
Brightness14

Brexit, well I live in France, masks still required as usual. Blood test requested by the GP I receive the results the next day, also GP appointments the same day. Pay about 8 euros to visit the GP and all my blood tests and any medication is free as I have no thyroid. Food expensive so not all perfect.

Sparklingsunshine profile image
Sparklingsunshine in reply to Brightness14

Hi

I know the NHS is a sacred cow to many and I'm in no way denigrating the staff. It's a wonderful institution but it was created over 70 years ago and times have changed. I just feel that as things stand it's not really working for many of us anymore.

It takes too long to speak to a GP, there's little overnight or weekend cover. Staff are burnt out. My practice is losing another GP. We aren't training enough doctors and those we are don't want to become GP's.

And as frustrated as I am about my blood tests, my problems are not life threatening. I worry about those with very serious conditions like cancer or heart disease who are being delayed or missed.

humanbean profile image
humanbean in reply to Sparklingsunshine

The reason the NHS isn't working for many of us is because there are too few staff and too little funding.

If we ended up with an insurance based system we would still have the same medical profession, mostly the same hospitals, the same guidelines, and the same staff.

I've paid privately to see a doctor a couple of times and apart from the fact the surroundings were nicer than an NHS hospital, the doctors were just as rude, and just as incompetent as any others I've met in the NHS. They just cost me more and wasted my money.

Sparklingsunshine profile image
Sparklingsunshine in reply to humanbean

Hi And yet France and Germany have insurance based healthcare and it seems to work much better than the NHS. I know the US system is awful but it doesn't have to like theirs. We want public services like much of Scandinavia enjoys but aren't willing to pay their rates of tax.

humanbean profile image
humanbean in reply to Sparklingsunshine

I know the US system is awful but it doesn't have to like theirs.

But that is the direction the UK healthcare is going.

keepournhspublic.com/centen...

morningstaronline.co.uk/art...

There was a thread recently about Operose:

healthunlocked.com/thyroidu...

Centene (a massive US healthcare company) owns Operose.

humanbean profile image
humanbean

really dire folate

I looked back at one of your recent posts and saw that you are dosing methylfolate at 400mcg per day.

Results posted with levels of folate on the forum are often quite low, so it seems to be a common problem. My levels swing around wildly from low in range to (what I think is) high in range, and I don't know why.

Since there is often no upper limit to the quoted ranges it is difficult to say what we should be aiming for.

In results that do show an upper limit to the range that upper limit can vary from somewhere in the range of 10 - 20 mcg/L up to over 60 mcg/L.

Another issue with folate is that some people are taking methylfolate, some take folic acid, and some take nothing and rely on food that might, or might not be, fortified with folic acid.

In the UK fortification of food with folic acid is voluntary. Other countries have different rules :

en.wikipedia.org/wiki/Folat...

The problem with folic acid is that it needs to be converted to methylfolate for the body to be able to make use of it. And some people can't do that conversion very well, or they do it very slowly.

This link describes the conversion required to get folic acid to become methylfolate :

takecareof.com/articles/ben...

The symptoms of folate deficiency are listed here :

b12deficiency.info/folate-b...

Since the body needs folate in order to make use of B12 the symptoms of folate deficiency (to my eyes) seem to have a lot in common with the symptoms of B12 deficiency.

I've just realised I'm waffling.

Your dose of methylfolate is quite low, and is the dose required to maintain a healthy level for a healthy person. Since you have thyroid disease and use this forum I'm assuming you aren't super-healthy and require more to absorb enough methylfolate for your needs.

Personally, I take a B Complex daily which contains 667mcg methylfolate. I also take an additional supplement three or four days a week which contains 1000mcg methylfolate. My last few results for folate have been in the range 10 - 20mcg/L.

Sparklingsunshine profile image
Sparklingsunshine in reply to humanbean

I found some folic acid 5mg so I'm trying that. It's what the GP would prescribe anyway if my levels have dropped. I never had an issue with folate levels before. So it must be to do with being hypo. I don't have Hashis as my antibody levels are always OK so must be some other reason. But thanks for the info. I've got a suspicion I have absorption issues as I also have a history of B12, iron, and Vitamin D deficiency.

humanbean profile image
humanbean in reply to Sparklingsunshine

Taking a huge dose of folic acid could mean that a folate test result is showing a high level of unmetabolised folic acid. It won't necessarily mean that your folate levels are better than they were.

At least if you take methylfolate you know your body can use it. If you take folic acid you won't know what your body is doing with it.

Sparklingsunshine profile image
Sparklingsunshine in reply to humanbean

Hi

True but I'm desperate at this point. I can't see my recent blood tests,my doctors are unreachable, the NHS has been useless and I've been feeling really unwell since October last year. I can't keep on like this. So I'm having to try and treat myself. It's ridiculous but it's where we are.

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