Considering self medicating looking for advice ... - Thyroid UK

Thyroid UK
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Considering self medicating looking for advice based on my bloods please

SLM81
SLM81

Hi everyone, I’ve had probably the worst week every I’m beyond exhausted my whole body is weak, my anxiety is through the roof and the Endo is still refusing to see me. I cried at the doctors today she’s trying her best but can’t give me anything without an Endo diagnosis.

I was looking at seeing a private endo but after reading through the forums the only one I could find In Scotland was Dr Toft and reviews seem to be mixed, I don’t think I could take it if he agreed with the Endo in my area and didn’t treat me. I also don’t have money to waste.

If anyone can send me the details of anyone who will treat me with a normal TSH I would give it a shot.

Otherwise I’m looking to self medicate but unsure if to try synthetic or NDT, also reading about conversion and don’t know how to see if I convert t3 or not?

My gp is looking to test all the levels that are needed but has said they might be refused. Here are my last results, sorry for the long post, just really upset at the end of my rope right now.

TSH 2.13 July 2018 range 0.27-4.2

Free Thyroxine 19 (is this free t3? ) 19 Dec 2017 range 12-22

FSH 0.3 Dec 17 range 3.5-12.5

Prolactin 591 December 2017 was 862 September 217 range 102-496

Anti Thyroid Peroxidase 109 July 2018 range 0-34

Thyroglobulin access 7.76 (No idea what this is? ) No range written

Ferritin 32 July 2018 range 13-150

Folate 20 April 2018 (have been taking folic acid mg since September 17 was 2.0 then range 3.9-26.8

Vitamin B12 222 April 2018 range 191-663

Forgot to add blood pressure taken today was 117/65

Just found Cortisol aswell 1039 range 166-507 September 2017 it was a blood test though not saliva

26 Replies
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SlowDragon
SlowDragonAdministrator

Can you add the ranges on these please

On Levothyroxine a TSH over 2 is likely too high

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

SLM81
SLM81
in reply to SlowDragon

Thank you for replying I’m having a hard time understanding the information on the link another thing that’s happening to me my brain just seems to me majorly slow, sorry 🤦🏼‍♀️ I’m not currently on any medication so not on Levothyroxine x

SlowDragon
SlowDragonAdministrator
in reply to SLM81

Ok

Your vitamin B12 looks very low. It's right at the bottom of the range

You had extremely low folate

Supplementing folic acid can mask vitamin B12 deficiency symptoms

Ask GP to test for Pernicious Anaemia

Also post these on PAS healthunlocked - they are B12 experts

healthunlocked.com/pasoc

You have above range TPO antibodies

SLM81
SLM81
in reply to SlowDragon

Thankyou I’ll do that just now x

What is the name of the antibodies test?

SlowDragon
SlowDragonAdministrator
in reply to VintageMustard

TPO and TG thyroid antibodies

Often have to get tested privately, especially if TPO antibodies are negative NHS don’t test TG

But ask GP

Read up on Thyroid UK main website about Hashimoto’s

Fibro is often undiagnosed thyroid

Full private testing for thyroid and vitamins recommended

Medichecks Thyroid plus ultra vitamin or Blue horizon thyroid plus eleven

DIY finger prick or pay extra for blood draw at local to you clinic

Thank you. 6 months ago I asked GP for 'antibodies' test. He said no. I didn't know there were two types. I asked him for a B12 test, as well as other tests including thyroid and he forgot to tell me I shouldn't be supplementing with beforehand. Am going to ask again for another B12 test today.

SlowDragon
SlowDragonAdministrator
in reply to VintageMustard

You need to be off all B vitamins for four to six months for a base level. Not realistic to do that

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also 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 both antibodies or vitamins

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. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Hidden
Hidden

Hi B12 looks low and antibodies high which indicates autoimmune issues. Worth looking at first that eliminate trigger eg gluten lactose and see how you feel.On the B12 her a good supplement and see if Your levels improve. Good luck

SLM81
SLM81
in reply to Hidden

Thank you x

Hidden
Hidden
in reply to SLM81

Sorry for autocorrect on my phone! Hope it made sense:)

SLM81
SLM81
in reply to Hidden

Yes I’m waiting to get more blood tests first hoping the gp might actually get me the b12 injections, I’ve not even looked at diet yet, I’m trying not to eat as much processed food and junk but I’m so exhausted I can’t be bothered cooking, I try to batch cook on my days off x

I agree with Slowdragon - this looks like a B12 deficiency problem more than anything else. Post on the Pernicious Anaemia Society forum page as Slowdragon has suggested - don’t supplement without having further investigations. Your doctor really should have spotted the problem but many aren’t at all clued up on B12 issues.

SLM81
SLM81
in reply to Jazzw

Thankyou I have had other tests done but trying to read all the results and figure out what is what with a fuzzy brain is so hard lol x

Your free thyroxine is a measurement of your T4, which is a ‘storage’ hormone that has to be converted in the body to T3. You haven’t included what the result was that I can see? Ideally it should be mid to upper end of range.

You have raised antibodies, which indicates you have Hashimoto’s.

You need to have both your free T4 (thyroxine) and your free T3 tested at the same time to gain an idea of how well you are converting T4 to T3.

I never had a raised TSH – highest it went was 1.6. I managed to see an endocrinologist who I was under at the time because of having high cholesterol (she ‘filled in’ as a lipids clinic as the local hospital doesn’t have one...) – she was utterly unhelpful, and took no notice at all of my private blood test showing that I had very low, below range free T3. I’ve taken the route of self medicating. There are some doctors/consultants who may be more knowledgeable. You could email louise.roberts@thyroiduk.org to ask for a list of thyroid friendly docs/endos/therapists (based on patient feedback, I believe).

I sympathise, it’s not easy! Wishing you luck and fortune. This is a good forum for support and advice.

SLM81
SLM81
in reply to ShinyB

Thank you I’ve added it now it’s 19 unless the t3 is under another name it’s not been done but I have asked today, the gp has been great but she did say some of the tests might be refused as it’s mesnt to be consultants that do these and not gps. I think the exhaustion and my hair is bothering me the most most of the other things I can cope with but I’m just getting so upset all the time just now, 2 years I have been going round in circles are being wrongly diagnosed with fibro 4 years ago first but I realised it didn’t fit and started doing research x

ShinyB
ShinyB
in reply to SLM81

IF you can't get them tested via your GP and an endo appointment is refused, you can pay privately to have a full thyroid panel blood test from somewhere like medichecks.com.

I really do sympathise. I've had health issues and hypothyroid symptoms nearly all my life, and been given all sorts of diagnoses usually with the word 'syndrome' on the end, which basically means they don't know what's wrong! I only got a full thyroid panel done a year ago and cried buckets when I saw in black and white that my free T3 was so low!

I couldn't view your results very well in the pic you added but it looked like your oestrogen result was low too - sex hormones can impact on thyroid function too. What sort of age group are you? The other thing that can get mucked up is your adrenals, which over compensate for poor thyroid function.

My off button has just detonated and I have to sleep now lol. Hang in there x

SLM81
SLM81
in reply to ShinyB

That’s my next move if she can’t get them done, all of my sex hormones aren’t right, my cortisol is mega high too I asked about adrenal problems aswell but the gp doesn’t really know what to do, I’m 37.

That sounds awful I hope you have the treatment you need now and feel better, it’s been quite an eye opener joining this forum and some groups on Facebook it’s makes me sad and angry at the same time so many people are living half a life because they aren’t being treated. Oh that’s me now wide awake after being exhausted all day that’s my normal if I get to sleep before 2am that would be amazing lol

Thankyou for all your help 😘

ShinyB
ShinyB
in reply to SLM81

oh why, oh why, oh why am I still online??!! lol.

I honestly think modern medicine doesn't look at underlying causes to health problems. Just throw a drug at a symptom. Pah. And don't even get me started on how all these drugs interact in your body!

I've been seeing Barry Peatfield, who wrote, Your Thyroid and How to Keep It Healthy, and who specialises in metabolic disorders. But he's based as far south as you can get in the UK so not much help to you! But the book is useful reading.

I don't have much faith in GPs or Endos really looking properly at how everything interacts in the body. My cortisol is all over the shop, as were my sex hormones. I'd love to be able to say I've seen a vast improvement over the last year..... but I've got a way to go yet. Hey ho. I'm getting a veritable library of books on the subject along the way though lol. Just wish I could concentrate long enough to take the content in properly and remember it all.. brain fog... yuk!

You might find this link interesting: web.archive.org/web/2010103...

Dr Lowe has passed on now, but his website was archived. It's not fully functional but you can look up a lot still.

Ok, this time I really am going..... ! I hope you manage to get some sleep - I think I've finally got into a good sleeping pattern at last. I had many many nights wide awake like you describe, after being exhausted all day. It's not nice :( Take care xx

SLM81
SLM81
in reply to ShinyB

Thankyou read quite a lot of that he was way ahead of his time I wish more doctors took that approach! Dr Skinner who was in Glasgow sadly passed away too he seemed to be very much on the same page as Dr Lowe!

The good thing is my gp seems to be ordering the right tests but just doesn’t know what to do with them.

My work requires high levels of concentration so pretty much as my energy goes into that so theirs not much let but right now I’m wide awake and much more focused so manged to process quite a lot of the information on the website there 😁

If I don’t manage to get the help I need I might be taking the train down to see your man there 😂

Thanks again I’m feeling a lot better now about everything just have to keep at it till I get the help I need x

ShinyB
ShinyB
in reply to SLM81

Yes, it can be a long hard slog. But this forum is wonderful for ideas, support and inspiration :)

On a couple of points: No, free Thyroxine is FT4 not FT3; and it is the conversion of T4 to T3 which is of interest to us, not how T3 converts. The low tech way to assess if there's a possible conversion problem is to look at the ratio of your FT4 level to your FT3 level, but unfortunately you don't seem to have had the latter tested. The high tech way is to have genetic testing to identify if you have a polymorphism on the DIO2 gene. Your blood pressure is enviably good :-)

SLM81
SLM81
in reply to MaisieGray

Thankyou just managed to grasp that I honestly feel like an idiot most days my brain just doesn’t work how it used to I feel like I’m barely functioning 🤦🏼‍♀️ The gp has asked for free t3 and reverse t3 but she did say they might not do it as it’s meant to be the hospital not gps x

Hi, you’re having a rotten time of it by the sound of things, I’m not going to comment on your thyroid levels as you’ve had fantastic advice from people here, but, your cortisol was way to high! Was this ever repeated to check? The reason I’m mentioning it is because either you might be in the early stages of adrenal fatigue ie we produce too much cortisol if the adrenals are in overdrive until the level starts to drop to too low as the adrenals get exhausted. They are also responsible for sex hormone stability do you have an oestridiol measurement? All I can see is below 20 and that cannot be right so I’m likely to be reading it wrong. If it is right let me know :-) as that would need improving hugely - you also might like to check out symptoms of early stage adrenal fatigue anxiety. Anyway, hope this helps and hang in there!

Nikki

SLM81
SLM81
in reply to Nikkilps

Thanks Nikki, I think it’s been going on so long I’ve come to think of it as normal but the past week has just been unbearable, I took a pill to delay my period on holiday I’m wondering if that’s why I feel so bad, around the time of my period I always worse than any other time but this took the biscuit my whole body is just so weak! I think it’s 20 which is low isn’t it! I’m just getting to grips with what’s is actually what but keep forgetting 😂 Hopefully she will be doing all of the blood tests again next week, I think I might even do a 4 point saliva test myself tbh. I read some info on a group on Facebook last night too and watched a few videos once that said how to test for adrenal fatigue with the light in my eyes and the pupils fluttered so indicates I have that too. No idea how to go about fixing that yet lol but if I can just get my b12 and ferritin fixed first then thyroid then move onto that lol x

I tried the light at the side of my eye last night in a dark room and my pupils were fluttering so looks like adrenal issues aswell 🤦🏼‍♀️ X

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