Left appointment today in tears: Hi I am new to... - Thyroid UK

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Left appointment today in tears

Butterfly9 profile image

Hi I am new to community, I am very upset because my GP says I have hyperthyroidism with high TPO and TG antibodies and he wants to stop my dose as well. I am taking 75mcg Levo diagnosed hypothyroid 2011 and he eventually wants me to take antithyroid medication thankyou

TPO antibodies 505.3 (<34)

TG antibodies 377.5 (<115)

TSH 10.3 (0.2 - 4.2)

Free T4 12.9 (12 - 22)

50 Replies

Butterfly9 your GP is a muppet as you actually have hypothyroidism and need an increase in meds.

Butterfly9 profile image
Butterfly9 in reply to

Thankyou I tried to tell him I have hypothyroid with symptoms of sweats/weight loss/tremor and he said it sounded like hyperthyroidism

in reply to Butterfly9

Butterfly9 ask to be referred to an Endocrinologist and e-mail louise.roberts@thyroiduk.com to request a copy of the member recommended NHS Endocrinologist list. Most are diabetes specialists and know diddly squat about the thyroid and the list should be helpful.

I wouldn't accept your GP's diagnosis as they're simply generalists.

Quasarlis profile image
Quasarlis in reply to Butterfly9

You need to go back to your doctor with a friend/witness who will sit there with a pen and note pad listening and taking notes, demand a referral to an Endo, written explanation of his diagnosis and inform him that you are going to report and complain about his ridiculously uneducated diagnosis of your condition! Be confident, abrupt BUT also non-sarcastic and abusive in your delivery, look him/her straight in the face, DO NOT be phased by their replies, interruptions ... Also record the conversation. You won’t believe how cowardly Drs are once you start saying about complaints, having witnesses etc taking notes etc.

shaws profile image
shawsAdministrator

You are not hyperthyroid. Your are hypOthyroid. Your doctor has diagnosed you as HypErthyroid due to high antibodies which is a wrong diagnosis.

Your TSH is 10.3 - hypothyroid and you should be prescribed more levothyroxine as you aren't on sufficient as the aim is a TSH of 1 or lower.

You have an Autoimmune Thyroid Disease called Hashimoto's which is caused by high antibody levels. These antibodies attack your thyroid gland until you are HYPOthyroid but the treatment is the same, i.e. levothyroxine.

You need an increase in levothyroxine of 25mcg every six weeks until your TSH is 1 or below. Many GPs make the mistake of believing a TSH 'anywhere' in the range is fine - no it isn't fine. It keeps us unwell.

To reduce the antibody attack on your thyroid gland - sometimes too much and you will feel hyper but at other times it is low. To reduce the antibodies going gluten-free can help reduce them and stop the attack on your gland.

Blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and the test and take afterwards.

Also ask GP to test Vitamin B12, Vit D, iron, ferritin and folate. Deficiencies can also cause unpleasant symptoms.

Butterfly9 profile image
Butterfly9 in reply to shaws

Thankyou I have a ferritin level of 6 (15 - 150)

Butterfly9 profile image
Butterfly9 in reply to shaws

Thankyou I have a ferritin level of 6 (15 - 150)

Folate 1.7 (2.5 - 19.5)

Vitamin B12 163 (180 - 900)

Vitamin D 14.8

(<25 severe vitamin D deficiency)

shaws profile image
shawsAdministrator in reply to Butterfly9

I will add in SeasideSusie who will be shocked by your levels and inform you what you should tell your doctor. Does he have a licence to practice.

Butterfly9 profile image
Butterfly9 in reply to shaws

Thankyou yes he is a GP

gabby57 profile image
gabby57 in reply to Butterfly9

Gormless plonker?

Jazzw profile image
Jazzw in reply to Butterfly9

Oh, my lovely. No wonder you feel ill. Those levels are all woeful. Has he tested you for pernicious anaemia? If not, why not? Treated you for iron deficiency anaemia? Vit D deficiency?

Butterfly9 profile image
Butterfly9 in reply to Jazzw

Thankyou no he hasn't tested me for pernicious anaemia but I have iron deficiency and gave me 800iu vit D for the vitamin D and 3 ferrous fumarate for the iron deficiency and I've been on both for 3 years

Jazzw profile image
Jazzw in reply to Butterfly9

The clueless oik... 800iu of Vit D won't even make a dent.

This "doctor" is not fit to practice... :(

Are those recent blood test results? If so, your doctor doesn't deserve his title!!

You need to get a second opinion as a matter of urgency. Goodness knows what he thinks he's trying to prove!

Butterfly9 profile image
Butterfly9 in reply to Jazzw

Yes they are recent results

Jazzw profile image
Jazzw in reply to Butterfly9

I'm so sorry Butterfly. Big hugs. You're right - he's wrong. Definitely. Not maybe. Is there another doctor in the practice you can see?

Butterfly9 profile image
Butterfly9 in reply to Jazzw

Thankyou yes I can see a different one tomorrow and try to get this sorted

Jazzw profile image
Jazzw in reply to Butterfly9

That's good.

I can't imagine how many other of his patients he's left unwell. It doesn't bear thinking about. You knew we'd know the right answer - how many other of his patients would?

shaws profile image
shawsAdministrator

Give your GP a copy of each of the following.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

SlowDragon profile image
SlowDragonAdministrator in reply to shaws

shaws That link doesn't work

helvella profile image
helvellaAdministrator in reply to SlowDragon

Does now! :-)

shaws profile image
shawsAdministrator in reply to helvella

Thanks Helvella.

SeasideSusie profile image
SeasideSusieAdministrator

Oh my, I just have to do this, sorry and if Admin wish to delete some of it, fair enough, I have to let this out

Oh FFS, this GP is a total d*ckhead and should have his licence taken away. He is dangerous and shouldn't be treating people.

Antithyroid medication for what is so obviously hypothyrod results - I think he should be given some antithyroid medication and see how he likes it.

***

So, Butterfly9 your GP has probably won Jerk Of The Day award. Please avoid this one in future, see another one, preferably one who knows what he's doing.

TSH 10.3 (0.2 - 4.2)

Free T4 12.9 (12 - 22)

Absolutely, definitely, no two ways about it, hypOthyroid. Absolutely, definitely, an increase in Levo needed immediately.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.

Whichever doctor you see next, take this information with you to back up your request for an increase in Levo. From thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

**

TPO antibodies 505.3 (<34)

TG antibodies 377.5 (<115)

Maybe you already know, but these high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Read and learn about Hashi's so that you can help yourself, most doctors attach little or no importance to antibodies and don't understand anything about Hashi's.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

**

Hashi's and gut/absorption problems tend to go hand in hand and very often low nutrients are the result. Especially so in your case as they are dire.

Ferritin 6 (15 - 150)

3 ferrous fumarate for iron deficiency for 3 years

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.

You desperately need an iron supplement and as your level is so low you should ask for an iron infusion (don't accept no for an answer, this is the worse ferritin result I have seen) which will raise your level within 24-48 hours, tablets will take many months.

You can also help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in... Please don't say YUK! needs must and you need all the help you can get here.

As for the iron deficiency, you are on the correct treatment but is it making any difference? Sounds like it isn't if you've been on it for 3 years. Is your MCV still low, MCHC still high? You need to ask the GP

Why, after 3 years of taking ferrous fumarate, am I still iron deficient?

Something is drastically wrong, and it's probably an absorption problem and it needs investigating - coeliac? H-pylori? Pernicious Anaemia? It's up to your GP to look into this.

**

Folate 1.7 (2.5 - 19.5) Vitamin B12 163 (180 - 900)

Take these results over to the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc/posts Mention if you have any signs of B12 deficiency - you can check that here b12deficiency.info/signs-an... also mention your ferritin result and your iron deficiency.

You will most likely need intrinsic factor testing, you very likely have Pernicious Anaemia, you probably need B12 injections, you definitely need folic acid as you are folate deficient but don't start taking that until other tests have been carried out.

Whatever the PA forum advises, discuss with your GP.

**

Vitamin D 14.8 (<25 severe vitamin D deficiency) 800iu vit D for the vitamin D for 3 years

I despair, I really do. Has it not occurred to your GP that after 3 years you are still very severely deficient? What a total t***pot!

So, treatment for severe Vit D deficiency is loading doses - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask, no demand, that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

Personally, I would see a different GP, get treatment sorted, then make a formal complaint for negligence against the GP who has ignored these results.

**

You need all your nutrients sorting and getting up to optimal levels if you have any chance of getting well. Without optimal levels your thyroid hormone can't work. With absorption problems your nutrients can't improve. It's a vicious circle.

I will add in SlowDragon as she has lots of information and links about gut/absorption problems and what to do to help yourself.

**

Please come back and tell us what the new GP is going to do.

Thankyou MCV still coming back low and MCHC still coming back high. I will not see this GP anymore and I am being tested for coeliac.

SlowDragon profile image
SlowDragonAdministrator in reply to Butterfly9

Definitely do ever go near that GP again, he obviously hasn't got a clue.

You need dose increase in Levo, some seriously mega supplements as result of being kept so under medicated

You can have test for coeliac, it needs to be an endoscopy and they need at give you a date ASAP

But even if negative you will need to change to strictly gluten free for at least 6 months, if it helps (as very many of us find it does) then stick on it

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, slowly lower antibodies and heal gut

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

You will need high enough dose to bring a TSH right down, below one and FT4 right at top of range

Eventually once Levo increased, vitamin levels improved and strictly gluten free you should see significant improvements.

If T3 remains low, only then is time to consider if you might benefit from adding small dose of T3

Oh FFS, this GP is a total d*ckhead and should have his licence taken away. He is dangerous and shouldn't be treating people.

Word. Awesome Susie xx

helvella profile image
helvellaAdministrator in reply to SeasideSusie

Butterfly9 and SeasideSusie,

... shouldn't be treating people.

Nor animals. Please.

Day after weary day - we see a steady stream, maybe now it is a torrent, of poorly treated patients. Every so often, we see a post which stands out even against that appalling background. Hokusai showed a great wave dwarfing mount Fuji. In the same way, this story temporarily pushes the big story of all those other thousands of patients away - still there, still important - but the focus is pulled to the single wave.

Truly dreadful.

en.wikipedia.org/wiki/The_G...

Rapunzel profile image
Rapunzel in reply to helvella

Awesome erudition even if you can't get the letters in straight columns, Rod ;)

GO SEASIDESUSIE!!! LOVE IT

Well said SeasideSusie and funny about “D*ckhead” comment!!!! 😂😂so true and shocking to treat someone with a TSH OF 10.3!!!! Bad enough they aren’t treating thousands within the guidelines!!!! In the one year exactly I joined Thyroiduk forum the members have gone up 10,000 .. think that speaks volumes!!!!!

Xx

What a total tosser, poor you. What a idiot- not surprised though as they are all the same.😨😨

shaws profile image
shawsAdministrator

Do you not think that this doctor should be reported for negligence?

helvella SeasideSusie SlowDragon Jazzw

SlowDragon profile image
SlowDragonAdministrator in reply to shaws

Definitely. But unless GP has added note to patient record regarding this appointment, it's likely her word against his.

Might learn more about what actually written down at follow up appointment with another GP

GP has written neuroses of unknown cause

SlowDragon profile image
SlowDragonAdministrator in reply to Butterfly9

Yes many of us get that!

It’s complete Bull***t

Your thyroid is being completely miss managed

See another GP and if possible take a supportive friend of family member with you

shaws profile image
shawsAdministrator in reply to Butterfly9

The cause is the doctor, not 'unknown causes'. See how they make decisions and write wrong diagnoses and we can do nothing about it. You want this removed from your records.

I'd definitely change your doctor and see your MP about getting this 'neuroses' removed. If our FT3 is too low it can cause unpleasant symptoms but they don't check FT4 and FT3. You can tell your MP you have been diagnosed wrongly and can show him the responses you've had on this forum.

Dreamer12 profile image
Dreamer12 in reply to shaws

Yes!!!

SeasideSusie profile image
SeasideSusieAdministrator in reply to shaws

I do indeed shaws (I've said it on a few threads!) but it will take a very brave and confident person to do that. It is a very sad and sorry state of affairs and what makes it worse is that we're reading this sort of thing on an almost daily basis :( . But this one takes the biscuit!

Jazzw profile image
Jazzw in reply to shaws

Yes, but I doubt it would have much impact unfortunately. He'll have covered his (non) actions.

Hi. As a doctor I am very confused by that. You are clearly hypothyroid and need thyroxine replacement. I would ask for a second opinion. See your GP today and see their response to those figures. This pathway from Camden CCG shows clearly that you should be treated.

gps.camdenccg.nhs.uk/cdn/se...

Perhaps send to him? You can watch my VLOG on it too at youtube.com/c/drrenee

shaws profile image
shawsAdministrator in reply to DrRen

This is not the only doctor, doctor, that has weird ways of diagnosing (non-diagnosing) patients who are very clearly hypothyroid.

Most on this forum are not medically trained and we can tell the difference between hypo or non-hypo person.

One of our favourite doctors who was a one-man thorn in the side of the Authorities of the way we are now diagnosed/treated stated (before his death) that patients were put in a parlous situation due to the ignorance of clinical symptoms and pure reliance on a blood test alone with disregard to clinical symptoms.

I think most members on the forum agree with his remarks.

Hi, just echoing other comments. Your GP is absolutely wrong. To suggest anti thyroid medication is an alarming error. TSH of 10.3 means you're clearly hypo and T4 of 12.9 is just within the NHS normal range, but very low and obviously much too low for you, as indicated by your high TSH. Please don't give up on this - persist until you get the correct diagnosis and treatment.

Your GP is an ignoramus! You have Hashimotos disease as shown by hig TPO and TG antibodies (aka autoimmune thyroiditis) and your results show primary HYPOthyroidism (underactive) - TSH over 10 and rock bottom Free T4. You need an increase in thyroxine. If the results you posted aren't the latest ones, you might have been having a Hashis flare when the dying gland dumps extra thyroid hormones into the system and makes you look hyper on a temporary basis. Afte the flare is over, you beccome more hypo as the more of the gland is dead. The last thing you want is anti-thyroid hormone. You might want to ask louise.roberts@thyroiduk.org for the list of doctors with more of a clue as you can't contiinue with this one, or at least try to see a different GP.

Latest results are what I posted, GP says they are hyperthyroid.

Your GP should be reported for incompetence, then.

Rmichelle profile image
Rmichelle in reply to Butterfly9

What the hell i signed up to this forum in july and i could do a better job than your bloody useless gp😠😠😠 i feel for you, if its any consolation i too have what seasidesusie would call a D***head aswell- gp and endo together. Good luck.go kick ass.

in reply to Angel_of_the_North

Hi can't add much, the GP should not be allowed near patients (or animals!) Completely wrong and not applying NICE guidelines. See a different doctor and go prepared with information linked here, and know what the treatment outcome should be before you go. Sad fact is you have to know more than your GP. With autoimmune you will have times when you feel hyper but you are hypo at TSH 10. AIP diet will help. Become your own expert and keep posting and reading. Good luck! X

Hi Butterfly

Your blood results show TSH 10.3 (0.3 - 4.2). Which part of this does your GP not undstand that you are above the guidelines for Hypothyroidism. I felt very ill at 4.2 .. I can’t imagine how you are feeling. I hope you will not return to that doctor! It’s quite shocking!! You have lots of excellent advice keep posting and take good care Jane xxxx

A different approach?

I am not an expert, but have I have had a long thyroid and adrenal battle myself, with sometimes severe symptoms, but I feel properly well now. I have never taken thyroid medication, except when I made the mistake of having a radioactive iodine test years ago and wish I hadn't.

Our bodies are lacking something when it starts going wrong, it doesn't have the trace minerals and nutrients to put itself right. When antibody measurements are high maybe it means the body is fighting with something to try and keep us well? What is the cause. Would drugs just hide symptoms but the underlying illness will progress and leave you with more problems and more drugs?

30 years after diagnosis I am feeling better than I have ever felt despite still having a thyroid swelling on my neck and having had a thyrotoxicosis problem to deal with (successfully) a few years ago. There is more advanced supplementation out there now that can help us feel more in control in weeks and months. Do research. I can give you some pointers if you don't know where to start.

Hi butterfly 9

I was diagnosed with hyperparathiroid I have shaking,jittery,heart races peeing a lot feeling very tired and unwell..but my GP has put me on no medication my best friend is hypo and is on Levo.some GPs have no idea about the working of the thyroid I have been fighting since 2005 to get mine sorted not all GPs are good ones..

Best of luck 💕

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