Antibodies - normal TSH levels and told mild hy... - Thyroid UK

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Antibodies - normal TSH levels and told mild hypothyroid

grainne_foss profile image
33 Replies

Hi just looking for bit of advice ...after a long battle with GP - and previous diagnoses of Fibromyalgia (in June 2016) - i convinced her to rerun my thyroid test and antibody test. After a some what confusing telephone conversation with GP today i was told my T4 was on low end of scale 15 (12 -25) and that my antibodies where at 127 (35 top end of range). GP said that I am have hypothyroid and will start me on low dose of medication. However when i asked him if the antibodies meant i had an autoimmune problem with my Thyroid he said it wasn't as TSH levels have to be off for this (not what research suggests). Not sure what meds etc he is putting me on as have to collect script tomorrow and he wants to do 6 weeks trial. I have been symptomatic since 2010 - with awful body temperature drops, hair loss, pain all over my body, lethargy, foggy brain etc the list goes on. He refused to tell me the other results - reporting they where all within normal range.

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grainne_foss
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bluebug profile image
bluebug

Under the Data Protection Act 1998 you can ask your GPs practice for a printed copy of your test results with the ranges.

It is common for receptionists to interrogate you and say that because you are not medically qualified* you don't need a copy as you won't understand them. To get round this you simply state I want them for my own records and I am legally entitled to them under the Data Protection Act 1998.

The receptionist will have to consult the GP but the practice cannot refuse to give you a copy. However if they still refuse to give you a copy then you will have to make a Data Subject Access Request. If you need to do so start a new thread and some posters on here who have had to make them will give you their letters.

I would advise you if you do have to write a letter send a copy in by recorded delivery to prove you have sent the letter in case you have to take the matter further either by contacting the Information Commissioner or your MP.

The practice is allowed to charge you £10 for the privilege of having the results but generally if you make it clear you know who to complain to etc and actually have to complain you will get the results for free.

*Some posters on here do have qualifications in relevant scientific and medical fields so they can understand them, or they want the result to show another qualified practitioner. Therefore any receptionist stating this is just rude and should be told off.

bluebug profile image
bluebug

I should have added the only reason your GP is being unhelpful and blocking you is because he doesn't know what he is talking about and doesn't want to be challenged.

On this occasion he is talking complete nonsense. As you can simply google NICE guidelines and the site patient.info to read up about hypothyroidism and present the information to him.

However your GP is also a fool for another reason. Patients who know about their condition, are adequately medicated and tested don't attend the surgery so much and cost the practice less money.

Good advice from bluebug but I would go further and recommend obtaining a copy of all of your medical records. It will probably cost £50 but it could well be interesting reading especially as you've been symptomatic for a few years. I discovered that I'd been undiagnosed hypo for 18 years and ended up with osteoporosis thanks to a bunch of incompetent GPs. Details here:

nhs.uk/chq/Pages/1309.aspx?...

grainne_foss profile image
grainne_foss

Thank you both - I shall call them today and request a copy

grainne_foss profile image
grainne_foss

Sad thing is they told me when i was 18 that i had antibodies against my thyriod ..im now 44. When i became symptomatic in 2010 i reminded gp of this and was dismissed ...took me several different gps ...total 6 years ...to recheck the antibodies. Always kept saying hormone levels within range so no problem. I now also have white spots on my skin and horrible pressure lower point of my throat ...they ignore this and havent even put hands on me to check for swelling etc

in reply to grainne_foss

We hear you. Many of us have found that we can't trust GPs with our health, we need to educate ourselves and not accept that our health depends on numbers on a lab report. Unfortunately even NHS Endos can be useless too.

loueldhen profile image
loueldhen

Read Izabella Wenz - on Facebook if not her book the root cause. Antibodies definitely mean Hashimotos - but that means nothing in my experience! Your symptoms are pretty unrelated to the diagnosis - it doesn't follow a set pattern. I hope the T4 works for you.

grainne_foss profile image
grainne_foss in reply to loueldhen

Bit confused to what you mean about my symptoms being unrelated to my diagnoses ...all my symptoms fit hypothyriodism apart from the skin but research suggests that secondary autoimmune probs can occur.

in reply to grainne_foss

I think your your symptoms absolutely fit the diagnosis.

loueldhen profile image
loueldhen in reply to grainne_foss

Sorry for the confusion - I meant 'one's' symptoms are not necessarily related to antibodies or the fact that you have hashis - not yours in particular. Too much to do today. Yours look spot on! Just trying to say politely that your GP is an idiot.

grainne_foss profile image
grainne_foss in reply to loueldhen

LOL ..i agree with you totally

Marz profile image
Marz

Are you able to have Private Testing done through Thyroid UK ?

thyroiduk.org.uk/tuk/testin...

Go for Package 11 - which includes the Vitamins and Minerals too. Sounds as if your GP will not understand their importance in making you well. B12 - Ferritin - Folate - VitD - all need to be OPTIMAL for the Levo to work and for you to feel well.

Once you are on your Levo/T4 - ensure you are tested again in 6 weeks - and have your dose adjusted/increased. 50mcg is the usual starting dose - and raises of 25mcg are normal - until you feel well.

Lets hope you soon have the treatment you so deserve. Keep on taking the advice given here and report back for more support :-)

grainne_foss profile image
grainne_foss in reply to Marz

Thank you so much ..i was debating going private ..will check it out

Marz profile image
Marz in reply to grainne_foss

Did you have the tests done ?

grainne_foss profile image
grainne_foss in reply to Marz

No private ones sadly....but getting retested tomorrow by NHS

Marz profile image
Marz in reply to grainne_foss

Sadly that will not include the FT3 as labs refuse to test if the TSH is in range ....

Don't forget the B12 - Folate - Ferritin - VitD ...

grainne_foss profile image
grainne_foss in reply to Marz

I know .. my b12 was checked and iron levels the last time. Showed my body was storing enough iron but there was not enough in my blood and that my follic acid was below the range. GP put me on 4 month course of follic acid.

Marz profile image
Marz in reply to grainne_foss

Ferritin is the stored iron. I would still have the tests done again. Folic acid works with B12 in the body so you need to know your B12 level A Result below 500 can be the cause of neurological issues and brain shrinkage. Low VitD also the cause is so much pain.

grainne_foss profile image
grainne_foss in reply to Marz

Hopeful they will do those tomorrow as she said was doing full blood works. Thanks for the advice

Marz profile image
Marz in reply to grainne_foss

Full bloodwork means the FBC - Full Blood Count - which does NOT include B12 - Folate - Ferritin - VitD. They have to be requested as extras and firmly. Just trying to help with the fibro. A diagnosis I once had. 😊

grainne_foss profile image
grainne_foss in reply to Marz

Ok will request them tomorrow if not may have bite the bullet and pay private lab

Marz profile image
Marz in reply to grainne_foss

Sorry to be a nag bag 😊😊

grainne_foss profile image
grainne_foss in reply to Marz

I appreciate all the advice 😀

Marz profile image
Marz in reply to grainne_foss

You are welcome. Wishing you wellness 😊

grainne_foss profile image
grainne_foss in reply to Marz

Well just got phone call from GP - ferritin levels are to high and folic to low. Will be getting print out later today

Marz profile image
Marz in reply to grainne_foss

If your B12 is below 500 supplement first before starting Folic Acid / Folate. Raised Ferritin can indicate inflammation somewhere in the body .....

😊

grainne_foss profile image
grainne_foss in reply to Marz

posted results in new post Marz - beyond frustrated now as only tested TSH.

Marz profile image
Marz in reply to grainne_foss

Yep just spotted it. Just logged in and its almost bedtime here in Crete 😊 Will reply tomorrow. I would read through this thread again for advice 😊😊

Ruthi profile image
Ruthi

Its just so depressing how ignorant doctors really are. We don't expect them to be experts in rare diseases, but thyroid disease is so common one would think they would be better educated!

Just a moan really, because we see so many people arriving on this board because they haven't been properly looked after by their doctors. All the advice you need at this stage is above.

grainne_foss profile image
grainne_foss

Ok thanks to all of you and your advice i got a print out of the results from my GP ..they are as follows.

Thyroid Peroxidase Ab - 172 IU/mL (<34) High

Free T4 - 13.6 pmol/L (10.6 - 23.2)

TSH 1.65 (0.3 -4.2)

Erythrocyte sedimentation rate 14mm/h (1-12) High

Serum C reactive protein 3.6mg/L (0 - 5)

Posted them in new post but put here for those following this thread

Marz profile image
Marz in reply to grainne_foss

As your T4 is low then the T3 will be too. T4 is a storage hormone doing very little in the body. It needs to convert into the ACTIVE hormone T3 which is needed in EVERY cell of your body. This is the most important and informative test result which you need. Fibro is often the result of LOW T3.

For the T4 to convert into T3 you need OPTIMAL levels of B12 ' Folate - Ferritin - VitD. Do you know your levels ?

You can click onto my name to read my profile. I was once diagnosed with Fibro 😴

mszara profile image
mszara in reply to Marz

Hi

Marz, you say that grain_fosse T4 levels are low, but they are in the range she listed. So is 13.6 low?

New to all this and trying to find out what is wrong with me lol. My T4 level was 13.1 in recent test.

Brilliant site and great info in the posts :-)

xx

Marz profile image
Marz in reply to mszara

Yes it is low in the range and needs to be towards the top of the range - in order for there to be enough to convert into ACTIVE hormone T3. Again that needs to be near the top of the range 😊

Happy to help ....

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