Had enough now: Had enough of going to the docs... - Thyroid UK

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Had enough now

jordystreet91 profile image
40 Replies

Had enough of going to the docs now, been 3 times for the same symptoms of which I have posted on here before

I went to the doctors last week because I literally felt like I was going to pass out for 3 days straight and being so brain foggy I couldn't do simple tasks of which I've been doing over the passed 7 years without problems, it got so bad I have had to have a sick note for last week because I felt so I'll, he seems to think it's been viral and to come back if the symptoms persist, in the week I've been off I took another blood test for my thyroid the results are

TSH 4.38 (0.27-4.2)

FT4 13.8 (12-22)

test was done with Thriva

I have had 3 tests which show my tsh is over range now, I've done some research and since I'm showing symptoms is this enough evidence to ask the gp for a trial of levothyroxine? I've been on folic acid since my folate was low the last time I went but I honestly dont feel any benefit from taking it so surely it must be something else, I have honestly had enough now it's really starting to affect my relationship with my partner and in turn my 7 month old daughter since I'm too exhausted to do anything other than lay on the settee and sleep

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jordystreet91
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40 Replies
sbadd profile image
sbadd

Have you had antibodies tested, what has your gp said about thyroid results?

jordystreet91 profile image
jordystreet91 in reply tosbadd

Yes, I had them done when I first had a private test and they showed as normal not raised, he saw my results on the the tests he ordered and said I was normal and started asking if I was a happy man seeing if I was depressed.

TSH 5.1 (0.3-4.2)

FT4 12.8 (12-22)

sbadd profile image
sbadd in reply tojordystreet91

Your tsh is definitely above range and t4 at the bottom, have you not been offered treatment?

jordystreet91 profile image
jordystreet91 in reply tosbadd

No I havent been offered anything, I got prescribed folic acid 5mg last time but apart from that nothing

sbadd profile image
sbadd in reply tojordystreet91

Can you see a different gp? My thyroid was borderline for years and i was finally put on meds after birth of my first child, not sure if pregnancy had anything to do with it but suspect i should have been on these way before, i would see another gp and ask for trial of meds, very frustrating

jordystreet91 profile image
jordystreet91 in reply tosbadd

Thanks a lot for replying by the way, I'm actually seeing a different gp on tuesday ill ask him to see if he will give me a trial, it's just like you say very frustrating because my partner is on the side of the doctor and thought I was just being lazy till I actually broke down after a 14 hour sleep to her, I'm sure you know yourself when you know your own body and know when somethings wrong, it's getting worse because the hair on my legs is slowly going away and dry skins on my legs, and I've noticed since feeling cold I dont sweat anymore even tho my job is working around molten zinc at times

sbadd profile image
sbadd in reply tojordystreet91

As greygoose said have they tested b12

SlowDragon profile image
SlowDragonAdministrator in reply tojordystreet91

There’s no point starting on any levothyroxine if your vitamin levels are low

Getting vitamin levels optimal by supplementing GOOD quality daily vitamin supplements....not cheap multivitamins

First step is to get your vitamin levels retested

Presumably you are still taking PPI?

SlowDragon profile image
SlowDragonAdministrator in reply tojordystreet91

Previously your B12 was EXTREMELY Low.

Folate and B12 work together

Rather than just taking folic acid, you likely need to improve ALL B vitamins with daily GOOD Quality vitamin B complex

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Your B12 so low you may also need sublingual B12 lozenges (eg Jarrow B12)

Low B12 symptoms

b12deficiency.info/signs-an...

Low vitamin D and low B vitamins may be linked as explained here

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...

greygoose profile image
greygoose

No FT3 tested? That's the most important number.

Did you have your B12 tested at the same time as your folate?

jordystreet91 profile image
jordystreet91 in reply togreygoose

Not this time around because the test for it includes everything and is a bit expensive but I did have it tested before on my first private test

ft3 6.06 (3.1-6.8)

greygoose profile image
greygoose in reply tojordystreet91

OK, well FT3 is good.

But, it appears that you have never discussed B12 (see Marz below). And, I'm wondering if you understand the importance of this vitamine. Starting you on folic acid supplements without addressing B12 shows that your doctor doesn't understand the importance, either. I find that rather worrying.

jordystreet91 profile image
jordystreet91 in reply togreygoose

I did ask about b12 and he said it was fine while I did disagree and he just said supplement, I have recently started supplementing b12 instead of a complex as i thought it would be too much folic acid on top of what i would already be taking wouldnt it?

greygoose profile image
greygoose in reply tojordystreet91

As far as I know, folic acid is water soluble, so excess is excreted. But, on the other hand, I wouldn't take folic acid at all. I would ditch the prescription and buy methylfolate. I do buy methylfolate! In a B complex.

But, what was your B12 result? Doctors will say it's 'fine' if it's just scraping into range, because they do not understand ranges. If it's right at the bottom of the range, though, you should have been tested for Pernicious Anemia. It is so important to always get the actual numbers, and not just your doctor's uneducated opinion.

jordystreet91 profile image
jordystreet91 in reply togreygoose

b12 was 338 (197-771) I know and with advice on this forum I actively get results from the doctors now, on the first test since I started symptoms it was a lot lower but still 'in range' and the last doctor said it was fine

greygoose profile image
greygoose in reply tojordystreet91

So, that was 338 (197-771) without any supplementation? OK, so that's not too bad. Not good, of course, but probably high enough to rule out PA. Could be causing a lot of symptoms, though. What are you supplementing with? How much?

jordystreet91 profile image
jordystreet91 in reply togreygoose

No, no supplementation and since I have been supplementing aswell, Its 500 I dont know the symbol but I'm sure you know what it means

greygoose profile image
greygoose in reply tojordystreet91

Yes, I know. So, what are you taking for the B12?

jordystreet91 profile image
jordystreet91 in reply togreygoose

brand wise?

greygoose profile image
greygoose in reply tojordystreet91

No, type-wise. Sublingual? Spray? Methylcobalamin or cyanocobalamin? How much?

jordystreet91 profile image
jordystreet91 in reply togreygoose

it's just a tablet, money was a bit tight so I got what I could afford until payday this month, I'll have to look at the packaging when I get back, I dont know the actual measurement for it buts its 500 and 20000 of the rda

greygoose profile image
greygoose in reply tojordystreet91

I dont know the actual measurement for it buts its 500 and 20000 of the rda

Not sure what is meant by that. Is it a %age?

jordystreet91 profile image
jordystreet91 in reply togreygoose

20000% of the recommended daily allowance, sorry about the confusion, I dont know what the symbol is on the bottle but I think its 500mg if that sounds about right?

greygoose profile image
greygoose in reply tojordystreet91

500 mcg. :) OK, so the RDA isn't a very reliable guide, especially not when you're deficient. So, that doesn't mean very much. But, 500 mcg is a decent dose for your level of B12, to begin with. When you've finished the bottle, go on to 1000 mcg as a maintenance dose. But, I hope it's methylcobalamin and not cyanocobalamin.

SlowDragon profile image
SlowDragonAdministrator in reply tojordystreet91

Agree with greygoose ......you would likely be better off taking vitamin B complex rather than folic acid

Many people can’t process folic acid due to MTHFR gene

B12 ...you may need sublingual B12 lozenges as well as vitamin B complex ....for a few months at least

jordystreet91 profile image
jordystreet91 in reply toSlowDragon

I'll have to research this gene, ill finish what I have at the minute then when I'm due a refill I'll get actual folate and a good quality b complex

SlowDragon profile image
SlowDragonAdministrator in reply tojordystreet91

You don’t need FOLATE and Vitamin B complex.

Folate is in the vitamin B complex

MTHFR

healthline.com/health/mthfr...

jordystreet91 profile image
jordystreet91 in reply toSlowDragon

right ok then, thanks for the link

Marz profile image
Marz

In your last post/thread you were asked if B12 had been tested. You didn't respond. If your Folate was low then it is more than likely your B12 will be too. Low B12 and Low thyroid can produce similar symptoms. Also supplementing Folic Acid/Folate/B9 can mask B12 Deficiency. Do not supplement before testing.

Also testing VitD and Ferritin is important ...

jordystreet91 profile image
jordystreet91 in reply toMarz

sorry I didnt respond I must of missed it I did have it tested

338 (197-771) I have been taking b12 recently

Marz profile image
Marz in reply tojordystreet91

How much B12 are you supplementing ?

I also asked about Ferritin and VitD ?

jordystreet91 profile image
jordystreet91 in reply toMarz

500iu I think it is? my ferritin was 159 (30-400) and my vitamin d was at 61 when i last got tested but since i have been taking 4000iu of vitamin d3, always had some d3 at hand since I work in a factory and have limited time to be in the sun

Marz profile image
Marz in reply tojordystreet91

Are you sure ? Do you mean 500 mcg or 5000 mcg ? Which brand of B12 ?

I lived in Greece for 15 years and still needed to supplement VitD - it's not always about the sun !

SlowDragon profile image
SlowDragonAdministrator

Your first post shows you had seriously low vitamin levels

healthunlocked.com/thyroidu...

Did you get tested for Pernicious Anaemia?

What supplements are you currently taking?

Vitamin D, B12, vitamin B complex?

Vitamin D, folate, ferritin and B12 need retesting

Thyroid needs OPTIMAL Vitamin levels

Vitamin D at least over 80nmol

Folate at least over ten

B12 at least over 500

Ferritin at least halfway through range

Your long term PPI likely causing these issues. You will need to supplement virtually continuously to maintain optimal vitamin levels

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

Low vitamin D and low magnesium are often linked too

Lots of posts about importance of magnesium on here

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

When you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

jordystreet91 profile image
jordystreet91 in reply toSlowDragon

No the doctor said my b12 was fine so no need, supplements I currently take are folic acid 5mg, vitamin d 4000iu (last test before xmas showed it increased to 61 which was before xmas) I usually supplement anyway due to working in a factory and having limited sunlight I just increased dosage, recently taking b12 instead of a b complex due to being on 5mg folic acid as I think it would be too much on top? i do supplement with magnesium every now and again whether it be with magnesium oil or bisglycinate and I take vitamin c every other day on top

Marz profile image
Marz in reply tojordystreet91

When Docs say fine/normal/ok they mean ' in range ' - but is where you are in the range that is key. Decide which information you wish to follow and stick with it - as Docs rarely know enough about vits and minerals 😥

jordystreet91 profile image
jordystreet91 in reply toMarz

believe me I'm following the information you guys give, when I said the doc said I was ok it was a bit of a dig at the doctor because like you say it is where you are in the range,

Good grief, this sounds a nightmare for you & I am new to thyroid disorders myself though witnessed it in family members. It's very dependent on the GP or Consultant you see sadly, a true lottery. However, their are guidelines where you can trial thyroid meds for three months regardless of bloods should you show symptoms of thyroid disorders. A private consultant told me this however I have yet to put it to the test. Think TUK mention it on their website, maybe if you can go armed with this info you may have more success. Good luck x

Wetsuiter profile image
Wetsuiter

Correct to get vits and mins sorted, but here are the NICE guidelines that your Dr may not be aware of as they only came in before Christmas. Take the info with you to the appointment.

nice.org.uk/guidance/ng145/...

Section 1.5.4 applies to you i think

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose.

jordystreet91 profile image
jordystreet91 in reply toWetsuiter

Thanks for that, I think that's the kind of ammunition I need when I see the doc, I'll see how it goes and hopefully come back and get some more opinions from people

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