Over treatment ?

[pembrokeshire]

New GP wants me to reduce thyroxin dose, but l am very reluctant as l feel very well on the present dose, which was reduced approx. 2-3 years ago. My blood results always show l am over treated, my previous GP was happy for me to continue on the dose, which l feel healthy on. A specialist also said to take the dose that works for me. Previous attempts to reduce the dose resulted in me being very tired and unable to function.

[SeasideSusie Remembering]

pembrokeshire

Can you add your latest results/reference ranges please, and say what dose of thyroid meds you are taking.

Are your vitamns/minerals at optimal levels - Vit D, B12, Folate, Ferritin?

We may spot something the doctors are missing (that wouldn't actually be hard!).

[pembrokeshire in reply to SeasideSusie]

Hi ..l don't have my results,but l take Thyroxine 100mcg alternating with 125mcg Daily ,originally l was on 150mcg daily. l also have pernicious anaemia and have B12 injections every two months,which has also been an issue with the new GP wanting to stop them !

[pembrokeshire in reply to pembrokeshire]

Went to see new GP on unrelated problem and got a lecture on my previous blood results and insisted that l had further blood test.L have an appointment to see him again on Thursday,but l am so very anxious that he will insist on lowering the dose of thyroxine and may even stop the B12 injections as the blood results are going to be exactly the same as last time.

[SlowDragon Administrator in reply to pembrokeshire]

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results. It takes 2-3 days to organise

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

They can no longer charge for printing out, rules changed after May 25th 2018

You need most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also very helpful (essential) if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

[SeasideSusie Remembering in reply to pembrokeshire]

We can't help without seeing results with their ranges, the amount of levo you're taking may not be correct, your results will tell us that. You can pop along to your surgery's reception desk and ask for a print out, it's our legal right in the UK to have our test results. Don't accept verbal or hand written results, make sure it's a print out. Post them on the forum when you have them and members will comment.

For a full picture we really need to see results and reference ranges for:

TSH

FT4

FT3

Thyroid antibodies

Vit D (include unit of measurement)

Folate

Ferritin

B12 not important as you're having injections.

[pembrokeshire in reply to SeasideSusie]

Results- TSH - 0.01, T4 - 16.3, FBC - normal , B12- 855 (on B12 injections )

[SeasideSusie Remembering in reply to pembrokeshire]

We need the reference ranges please, and there's not enough tests there for a full picture.

[pembrokeshire in reply to SeasideSusie]

TSH- 16.3 (11.0 - 25.00) ,T4 16.3 (11-25.00), Serum folate- 5.9 (>3.00 ) These are my results with ranges. Went yesterday to collect repeat prescription and found to my horror that the GP has taken off the Thyroxin ! I did go to see another GP at the practice and discussed the problem,she was understanding and was happy for me to continue on original dose. The new GP seems to have interfered and canceled the thyroxin without any further discussion with me.I have to have bloods repeated in 8 weeks,which seems utility pointless.So the situation has got worse and l'm at my wits end.

[SeasideSusie Remembering in reply to pembrokeshire]

pembrokeshire

TSH- 0.01 - I've corrected this as you'd put your FT4 result here.

FT4 16.3 (11-25.00)

Serum folate- 5.9 (>3.00 )

The GP who has removed your thyroxine, this is totally wrong.

Presumably that GP is looking at your TSH and because it's under range has decided you are overmedicated. However, you're not because FT4 is only 38% through range.

TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone).When there is not enough thyroid hormone (natural or replacement) TSH will be high.

If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

So your pituitary is detecting that you have some thyroxine - albeit by taking your Levo - so doesn't need to send the signal so TSH is low. But your FT4 is low in range which means that even though you are taking Levo, your actual hormone level is quite low.

I don't know why doctors don't understand this. I had exactly the same problem at my surgery with the GP banging on about low TSH, but now I try to see the Advanced Nurse Practioner who fully understands this and agrees with me that my dose doesn't need altering because my FT4 and FT3 are well within range.

You can use the article by Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

But you still need the full list of tests mentioned above to get a complete picture.

Folate is on the low side and as you're having B12 injections are you taking a B Complex to balance all the B vitamins? If not then consider Thorne Basic B or Igennus Super B.

[SlowDragon Administrator in reply to pembrokeshire]

Can you add the ranges on these results if you have them

Plus you need folate, ferritin and vitamin D test results and ranges

And both TPO and TG thyroid antibodies

If you were diagnosed as having Pernicious Anaemia (rather than low B12) injections are for life. They should never be stopped

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Ask GP to test vitamin D, folate, ferritin and thyroid antibodies

Essential to test FT3, FT4 and TSH together. NHS frequently refuses unfortunately

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you have results and ranges

[MissGrace]

Are you hashis?

If your GP is basing his demand on your TSH reading, tell him he needs to treat the symptoms not the blood test. If your T4 and T3 are in range you are probably not over-medicated.

If he hasn’t tested your T3 he bloody well needs to before he states you are over-medicated. Rather than deciding thyroid function by a pituitary hormone he ought to test the thyroid hormones and check you over for signs of over-medication.

Do not let him reduce the dose and make you ill.

I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps - I’m on T4, you might find the comments about hashimotos and over-medication useful in your battle to be well.

I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.

Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo despite the fact that my TSH will go lower and it is already below the reference range.

What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low.

My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well. This is the reason the T4 and T3 test are so important.

The combination of hashimotos and synthetic T4 creates a perfect storm. Your pituitary goes AWOL and you may struggle to do anything with synthetic T4. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.

There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. This is the least your GP could do - rather than just assuming you are over-medicated. You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56!

He should be investigating why you are not symptom free and feeling better despite the stupid TSH reading. Not responding to a piece of paper with a blood test result on rather than a patient. Isn’t he interested in you actually feeling well FFS - I mean that is his job isn’t it?

Do battle - and good luck. Tell your doctor to dose the patient not the blood test. And remember what the learned Diogenes has posted on this site - TSH is for diagnosing thyroid issues - not for monitoring treatment. T4 and T3 monitor treatment.

If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case! 🤸🏿‍♀️ #fightforyourthyroid

[m7-cola in reply to MissGrace]

Very clear statement of hypo and Hashis. Thank you!

I particularly like your mention of the doctor’s comments.

[london81 in reply to MissGrace]

this is fantastic! well done for your persistence and what a great endo you see. could you please private message me their name ? my father is 60 and very unwell and i will move heaven and earth to get him to see a private practitioner who talks sense. he’s god hashis and severe mental illness nobody from gp to psych to endo has a clue what to do with auto immune. i’m hashis and have treated myself successfully with private tests and self medication but my father has more complex needs. thank you in advance