Results from GP. Given up trying to get sense o... - Thyroid UK

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Results from GP. Given up trying to get sense out of staff. Am going to get private test. Advice Please

Maggimay profile image
31 Replies

Hi all When I am in the room with my GP he is great. Tryng to get any sense out of staff on phone is hopeless. I cannot get any info about Thyroid test other than

TSH 0.005 mU/L 034 - 5-5 60 mU/L and T4 24.6

I have blood results of

HbA1c 6

cholesterol 9.17

triglycerides 3.48

HDL cholesterol 2.02

LDL cholesterol 5.56

Total cholesterol HDL ratio 4.5

non HDL cholesterol 7.15

Vit D serum 25 - HO vit D3 level 70.3

Ferritin 31

B12 208

Folate 7.4

Does anyone know if these levels are good? They all say NORMAL. Starting to loathe that word.

Have got other things on list liver renal sodium potassium and more! PLEASE can anyone tell me which test kit to get. Can I get one with just the thyroid hormones being as I have got the above or do I neeed to get those done again. My GP will help me if I can get a doctor to say I need T3 if I do Will write me a script get it from abroad etc. He has tried to help me after years of badly medicated thyroid leading to 6 emergency hospital admins with bowel failure. He has agreed not to cut levels even if they run high But I used to be on T3 and this was stopped by endo who dealt with me after emergency admins. GP did lower my T4 as he was scared by level but says he will listen to me after that went belly up! My BP has come down blood sugar down chol was down but has gone up. I dont feel well. I cant lose weight. I lost 2 stone but now no progress with remaining 3 stone. I am weary. I hurt all over my eyes are burning My feet are burning My legs and shoulders are agonising despite strong pain patches. I cant sleep I am depressed and despondent.

I have had great help on here but I am tech useless and my brain is really fuzzy and I am confused. I lose the great posts people have sent to me. Kind people have shown me them but I still cant find them. OH has had massive issue with e mail and other tech stuff that has added to confusion.

I am so sorry to take up time and I hope I do not seem to be ungrateful for all the help I am. I just can't retain info or fnd it agan!

My plan is to get one of the tests and someone gave me a link which I cannot find! I want to know which I need to get. Also how to do the Thyroid Thursday thing. Have decided to borrow money to see private thyroid expert. My GP is great but obvs does not have the expertise or time to sort me. Have been ill for most of my life due to med negligence and arrogant docs not listening. Have also had great docs help me move forward. I am 65 now. Being older makes it all harder to deal with. I want to do all I can to be well in old age.

Sorry to go on and ask same questions but can't find anything! At end of tether. Hope to be able to give something back to you all one day.

Thanks Maggi

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31 Replies
diogenes profile image
diogenesRemembering

You need an FT3 test. On the surface it looks like you are a poor converter, and your FT4 is marginally high. Your high cholesterol might be a symptom of failure to get adequate T3 in your body. Vitamin levels so-so but I do think that since you have been on T3, you need to revisit your FT3 to clarify what's happening.

Maggimay profile image
Maggimay in reply to diogenes

Thank you What is a FT3 test. Can I ask for that at the GP or get it from one of the tests on here.

diogenes profile image
diogenesRemembering in reply to Maggimay

If you are in the UK its hopeless on the NHS. It'll have to be private I'm afraid. People on this site can guide you.

Maggimay profile image
Maggimay in reply to diogenes

Thanks have sent you a mail then seen this. I need to find nearest private doc to me. Yes am in the UK North West if anyone can point me to a good doc. Had enough. Made self cry now. Thanks so much diogenes I need help and you have helped already

gillianmellor profile image
gillianmellor in reply to Maggimay

Ur coleseral is high...as well ...mine was 4.8and my gp put me on statins..

Maggimay profile image
Maggimay in reply to gillianmellor

Hi Gillian I took my self off statins. Told my doc after They can cause terrible helath probs! They did for mr.. My good chol is better than my bad chol and I have read that is ok even if overall chol high. Lots of controvorsy over this at mo. Hard to keep up with it all. Thnaks for anwereing Maggi

gillianmellor profile image
gillianmellor in reply to Maggimay

Thats ok ...i only stayed on statins for two months... just to get my col down and to prove to my g p that it wasnt my col causing all my symtoms..good luck....i have waited four months for my app with endo wich is 3rd oct.. fingers crossed they do something...

Maggimay profile image
Maggimay in reply to gillianmellor

Good for you although a disgrace we have to prove what we know re our own bodies. Long wait for you. I hope you get sorted when you finally see endo

Maggimay profile image
Maggimay in reply to diogenes

Do you know how much private docs cost. Am cringing at the thought!

Rmichelle profile image
Rmichelle in reply to diogenes

I got my ft3 done by my doc.x

Peaches71 profile image
Peaches71 in reply to diogenes

I've found this if a standard NHS test is in range that's it with my gp - you don't have a thyroid problem in his view.. I've just ordered my blood tests this morning

gillianmellor profile image
gillianmellor in reply to Maggimay

I had it done at nhs hospital via e n t dept referal....ask gp to sendyou to a specialist endocrine dept....or ear nose throat refered me

For t3 and t4 and tsh test... came back quick...

Maggimay profile image
Maggimay in reply to diogenes

Oh is it Free T3? I think I will have to see GP again as staff seem incapable of giving me the full results. It takes a long time to get appoint. I was put on T3 only about 20 years ago I seem to recall it was due to being a poor converter but endo after emergency hosp admin said I should never have been on T3 at all never mind T3 only and gave me T4 only.

I am going to see private doc people talk about on here. I can't go on.

Is there a list somewhere? Sorry I am so gormless with tech and thanks again.

diogenes profile image
diogenesRemembering in reply to Maggimay

Put out a plea to Clutter on this forum. You'll get good advice there. That endo seems to be as useless as a chocolate teapot.

Maggimay profile image
Maggimay in reply to diogenes

Crying eyes out here and laughing at same time at your choc teapot comment. Endo has retired now. He was useless he took me off T3 put me on T4 and I ended up in a state of collapse. Hubby is a nurse and rang up and kicked off told him that I felt like I was dying and looked like I was dying. He let me have a bit of T3 just for a few weeks. Havent been welll since although obvs wasnt right on T3 only as emergency admins proved. Thanks so much. Clutter has helped me before I think. Do I steart a new post to find her? Soz I am so useless with computers!

RedApple profile image
RedAppleAdministrator in reply to Maggimay

Maggimay,

There's info about private testing on the main Thyroid UK website here thyroiduk.org/tuk/testing/p...

Have a read about what's available, then if you have questions come back here and start a new post with your queries.

Maggimay profile image
Maggimay in reply to RedApple

Ooooh thanks. Have decided to borrow money to see private thyroid doc Can take no more! Would best way forward be to get private test before seeing private doc do you think? Will go and look now at your link and thanks again.

Clutter profile image
Clutter in reply to Maggimay

Maggimay,

I would order a private thyroid test first. If FT3 is low you might want to try supplementing T3 along with Levothyroxine to see whether symptoms improve. Medichecks offer #ThyroidThursday discounts.

Email louise.roberts@thyroiduk.org for a list of member recommended endos.

VitD 70.3 is fine for now but you will need to supplement 5,000iu D3 alternate days October - April to maintain levels.

Ferritin is low. It is optimal halfway through range and most people need it between 70 - 100. You can raise ferritin by supplementing iron with 1,000mg vitamin C to aid absorption and minimise constipation.

VitD and iron should be taken 4 hours away from Levothyroxine.

B12 and folate are low. If you have symptoms in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc If not, supplement 1,000mcg methylcobalamin and 400mcg folic acid or methylfolate to raise B12 and folate.

Maggimay profile image
Maggimay in reply to Clutter

Clutter thanks so much. Normal no action needed it said on the NHS thing! Sigh. Have looked on the medi checks page Can you say which of the tests to go for on the Medichesck site as there are quite a lot.? I have the NHS vit results and will follow your advice. Can I get the supplements from somewhere like Natures Best or is there somewhere you use if you dont mind me asking. How do I go about Thyriod Thurs just go on the Medichecks site on Thurs? Hope to get T3 if needed. Will e mail Louise. Thank you from the bottom of my heart Maggi

Clutter profile image
Clutter in reply to Maggimay

Maggimay,

Look for Medichecks TSH, FT4, FT3 and antibody tests.

I get my supplements from Amazon. I'm currently using Doctor's Best D3 but I'm pretty sure I used Nature's Best before that. If you buy on Amazon please use the affiliate link healthunlocked.com/thyroidu...

Maggimay profile image
Maggimay in reply to Clutter

Thanks a million. Do I need the reverse T3 which is expensive? Hoping not and just the ones you said. Will order Thurs. Will go on Amazon and use the link you gave me tomoz for vits. Need a lie down now. Thanks again to you and all. Feeling less desperate now.

Clutter profile image
Clutter in reply to Maggimay

Maggimay,

Don't bother with rT3. In addition to the cost of the test you would need a phlebotomist to draw the blood.

Maggimay profile image
Maggimay in reply to Clutter

Oh thanks so much

RedApple profile image
RedAppleAdministrator in reply to Maggimay

I would say don't make any appointments with private docs yet. Get your private blood tests done first, and when you have the results, post them here on the forum. Members can then explain things to you and offer their thoughts on where you can take it from there.

Maggimay profile image
Maggimay in reply to RedApple

Thanks ever so much. I will do that. I know I am gormless but is there a way to get back to this thread or should I start a new one?

RedApple profile image
RedAppleAdministrator in reply to Maggimay

Not gormless, just new to this very complicated stuff ;)

Start a new thread whenever you need to.

Maggimay profile image
Maggimay in reply to RedApple

Thank you so much.

Maggie0652 profile image
Maggie0652

Hi Maggimay. Whereabouts are you in the North West? I'm in Liverpool and my NHS endocrinologist at the Royal Liverpool Hospital has just written to my GP asking them to prescribe T3. (Although I haven't seen GP yet, so don't know how they'll react). The endocrinologist has said she will monitor me on my self-sourced T3 if the GP refuses.

It may be worth you asking for a referral to them if you're within travelling distance.

Maggimay profile image
Maggimay in reply to Maggie0652

Thanks very much. Can get to

Liverpool used to live there so know way round well. Miss it terribly! Anyway sorry best not to start me on my fave place in world. Lol Can you pm me endo name. Am waiting for list from this site but all info gladly recived.

Phoenix605 profile image
Phoenix605

Hi Maggie, As he is amenable ask your GP to request FT3 test again and specify in the request 'suspect thyrotoxicosis' a very low TSH and high FT4 should ensure this is treated as a medically required test.

I believe the lab is SUPPOSED to do FT3 test if TSH and FT4 are out of range to rule out thyrotoxicosis as a cause. However, if GP does not put enough justification for a test on a request, labs have 'discretion' to refuse a test as unnecessary (some GPs were ordering way too many genuinely unnecessary tests). This system if failing in part because GPs are not doing their bit properly.

I havent used blue horizons but I know the Medichecks docs are like most others and tend to say normal if thyroid results are in range so I dont bother to have results assessed by them and get the results back quicker.

If you go onto the Medichecks website via the link you were given above on a Thursday, you will find a Thyroid Thursday button, click on it and it will take you to the days offers. The test clutter suggested for TSH, FT3, FT4 and antibodies is Thyroid check plus, it is normally £59 but about £10 cheaper if its on offer.

I have already had antibodies done and get FT3 and FT4 through GP so I buy just the FT3 test for £29 and get the blood draw kit version, the surgery nurse has always been happy to fill an extra tube when she fills the NHS one and no extra cost as she already has the needle in my arm! If NHS lab still wont do the FT3 again GP may be happy to put an instruction on your notes. (Finger prick kit and blood draw kit are the same price)

Ive just noticed hubby is a nurse so maybe he could do the draw for you, they supply everything needed.

Ask your surgery to turn on your electronic access to test results that way you wont have to keep fighting with them to get the ranges etc. If they are still awkward ask your GP to help. Before I knew about electronic access my GP put on my notes I had to be given all results in full if I asked which shut one awkward one right up 😀

Maggimay profile image
Maggimay in reply to Phoenix605

Thanks so much Pheonix l will get on to all that. Yes hubby can do bloods He is trained in phlebotomy. I wouldn't even have thought of that! So you mean get the checks done but not interpreted and then put them on here? Cheers Maggi

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