Gp wants to change my Thyroxine dose

[Tiggerdeb]

I had Thyroid cancer 20 years ago and had my thyroid t removed. Been on 175mg ever since with no issues. My Gp forced a reduction to 150mg and wants to reduce it more.. when. I had my thyroid removed my oncologist told me the high dose is to keep the cancer away.. I am so concerned - can I challenge this and ask for a 2nd option

[SlowDragon Administrator]

What results have you got after reduction to 150mcg?

Refuse to reduce dose and get FULL thyroid and vitamin testing done yourself

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Lower vitamin levels are more common after dose reduction in levothyroxine and/or as we get older

On levothyroxine we need GOOD vitamin levels

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

[Tiggerdeb in reply to SlowDragon]

Test results

.

[Tiggerdeb in reply to SlowDragon]

I spoke to my gp at length yesterday and she agreed to refer my case back to a ENT specialist at the hospital and a full blood works including T4 T3 and calcium check. She acknowledged that correct bloods had not been done and would leave my medication as is till tests completed and contacted my ENT specialist. So good outcome st the moment

[SlowDragon Administrator in reply to Tiggerdeb]

Make sure you test vitamin D, folate, ferritin and B12…..via Medichecks or Blue horizon if necessary

Having had dose levothyroxine reduced, vitamin levels frequently reduce

We need optimal vitamin levels for good conversion of Ft4 to Ft3

[shaws Administrator in reply to Tiggerdeb]

That's good that GP has listened to you and is going to contact your ENT. I have had proof of the inept knowledge of GPs - not all but just a couple is a couple too much - especially when the information they give is incorrect.

[Tiggerdeb]

See latest result

Test results

[SlowDragon Administrator in reply to Tiggerdeb]

Just testing TSH is completely inadequate

Come back with new post once you get FULL thyroid and vitamin testing

[pennyannie]

Hello Tiggerdeb and welcome to the forum :

It is essential that you are dosed and monitored on your T3 and T4 blood test results and not a TSH reading which is what we have here, though I know in primary care at the yearly thyroid function test, a TSH reading is likely all you get, with sometimes a T4 measure.

The TSH was originally introduced as a diagnostic tool to help identify a person suffering with hypothyroidism and was never intended to be used once the patient was on any form of thyroid hormone replacement.

Since you haven't a thyroid, your HPT axis, the Hypothalamus - Pituitary - Thyroid feedback loop - which is what the TSH reading is reliant on - doesn't work as the loop is clearly broken as your thyroid isn't there any longer.

If your doctor is unable to run even the minimal of blood tests, of say just a TSH, T3 and T4 it would be prudent to stay on the dose you are on and arrange a private blood test so we can see exactly where your T3 and T4 readings sit.

There are private companies listed on the Thyroid UK website thyroiduk.org who can run these or more detailed tests for you and all you do, once you have back the results is start a new post on the forum with the results and ranges and you will be talked through what it all means for you.

This is where we all start off, as without the correct information it's all a bit of a guess :

T4 - your Levothyroxine is a storage hormone that needs to be converted by your body into T3 the active hormone that runs all your bodily functions.

Your ability to convert T4 into T3 can be compromised, so for a full thyroid function evaluation there is a more detailed blood test, generally referred to as a full thyroid panel and includes the TSH, T3. T4, antibodies inflammation, and ferritin, folate, B12 and vitamin D - obviously it costs more money but I think it's a good solid base to start out with and work from.

[lovelab]

What level of cancer did you have? Only asking, because my husband had thyroid cancer 10+ years ago and is on 200umg Levothyrox with a lower TSH than you and the endocrinologist dosed him like this to keep the cancer from spreading. He had a PT4 which meant it had already spread by the time the found it. They called it peppered lungs (translated from French). He had 2 or 3 radio active treatments after total thyroidectomy and taking out the ganglions in neck. I would get another opinion, maybe from a cancer doctor (oncologist) or a good endo.

[Tiggerdeb in reply to lovelab]

It was a level 4 papillary cancer

[lovelab in reply to Tiggerdeb]

Similar to my husband then. If I were you I would ask for a referal.

[Charlie-Farley]

Hi Tiggerdeb

Do take the above advice. Your doctor is a fool and a dangerous one! If you felt well on your original dose they should have left well alone. Dabbling out if their depth!

Be your own advocate 😊👍

[LAHs in reply to Charlie-Farley]

You took the words out of my mouth! If TiggerDeb feels well on 175 mcg then do not mess around, stay on that dose. TD is probably feeling well because on that dose she is generating T3. I had the identical experience. If he reduces your (TD) prescription then continue to create 175 mcg by cutting up an extra tablet appropriately. Continue to do this while you are looking for another doctor, a more enlightened one.

[Charlie-Farley in reply to LAHs]

Tiggerdeb more comments on your string 😊👍

[annnsandell]

This is usual practice after 20 years of cancer-free, and congratulations. I am 14 years on and the surgeon (also oncologist) recommended I end suppression last year reducing my dose from 100 to 75 and 100 every other day. It is recognised that there are dangers to the heart and bones from continual suppression although, I have not seen research to back this up. Have you had a bone density scan or have any heart problems?

How did you get on with the previous reduction, possibly noticed some changes to start with but settled down?

Have all tests done first and 6 monthly so proper judgements can be made and you must have a Thyroglobin test yearly, look out for thyroid growth. I was recommended that I aim for 1 to 2 TSH which is the lower end of the TSH range. but your T3 must be in range and you feel ok. Check you are not taking any other drugs that might interfere with TSH results.

Have the reasons for suppression and the change been explained to you and I assume that your GP is familiar with your case and not just treating you as any other thyroid patient?

Only small increments down at a time dependent on results and 6 months between.

See Butterfly Cancer Trust for specialist cancer advice.

[Tiggerdeb in reply to annnsandell]

Thank you for you update / had bone density a few times - no issues - no heart problems either. Feel tired after latest reduction. I think doc treating me as thyroid patient not cancer patient

[annnsandell]

Just ask him for explanations to see if he is on the ball. It might, of course be that you are not converting your reduced dose enough, T3 test would be useful. Tell him/her. I usually find our health centre's email service is useful if yours have one. You can put your questions in writing and get a reply rather than just on the phone or through a receptionist. The written record is taken seriously.

[LAHs in reply to annnsandell]

"T3 test would be useful" ? No, T3 test is absolutely essential. T3 is the measure of how well you feel.

[PandoraXX]

I don't know how old you are but after menopause, the body absorbs thyroid more easily because of the reduction of estrogen (which absorbs thyroid). I also had thyroid cancer - 15 years ago when I was 44 - and was mostly on the same dose with no problem to keep my THS suppressed. But after a hysterectomy, my normal dose became too much. But in my case I really felt hyper, so knew something was wrong.

[MGC153]

First of all did you tell your primary care physician this? What did (s)he have to say about that particular dose keeping your cancer in remission? It's always possible that it was your oncologist who didn't speak clearly, and that the levothyroxine has nothing to do with your cancer coming back. Without telling your primary care physician what the oncologist said about the dose you won't know. Also, keeping you on 175 long-term may have been common practice 20 years ago, but there may be some legitimate scientific development for why you don't need to do that. I'm not arguing either way, I think you just need to get a straight explanation from your PCP why they would recommend that. If a doctor wants to take me off something that I think is working and that I've been told I have a good reason to stay on, I refuse to leave the office until they fully explain to me why they think staying on it is not beneficial for me.

[Charlie-Farley]

Hi Again Tiggerdeb

Really advise to start reading the up to date scientific research (loads on here) helvella and diogenes and others make continual contributions. There is just as much, if not more evidence of under medication causing heart problems. Cardiology seem more aware than endocrinology.

Do be your own advocate. Bone density can also be affected by a person’s ability to do load bearing exercise because they are exhausted on a sofa. I’m afraid no medical qualifications impress me now especially after how I was mismanaged. My experience pales compared to the ignorance others have been subjected to.

See my profile if you want context as I have detailed my journey. We are all different but medical profession do forget this and all to often dish out ‘cookie cutter’ treatment.

[LAHs in reply to Charlie-Farley]

Wow, " Bone density can also be affected by a person’s ability to do load bearing exercise because they are exhausted on a sofa." Ain't that the truth! What an interesting and accurate insight. Thanks.