Is there a different test range for people who have had their thyroid irradiated?

[5219]

I was diagnosed with Graves about 15 years ago had my thyroid irradiated. Ever since having been battling with my Dr about being in range but not feeling well. I have at last managed to get her to raise my dose from 100mcg to 125mcg a day and I am feeling better but she now is saying I am close to being out of range. I am sure I have read something before that the range is different if your thyroid is not working at all or if you have had it removed. Would be good if someone could clarify this for me.

[bantam12]

Not that I know of

[MaisieGray]

No there isn't. The reference range, (or more accurately, reference interval), isn't what sick people have to fit into according to how their thyroid came to be dysfunctional, but an analysis, supposedly accurate and representative, of the usual, average, or typical state or condition of a healthy euthyroid population, for the purposes of comparison. So given that, there won't be different ranges for different reasons of being hypothyroid.

[greygoose]

No, there isn't, as others have said. Nor do I think there needs to be. But, what doctors shouldn't be doing is comparing people who are hypothyroid for whatever reason, with healthy people. And, the ranges are based on supposedly healthy people (but without any proof that they are!). There's so evidence that if you are hypo, you need more thyroid hormone than healthy people, and just keeping hypos in-range will keep them sick - a certain proportion of them, anyway. So, it's really damaging that doctors are such slaves to ranges, and incapable of using their initiative and common sense. Nor do they understand that guide-lines are just that, they are not rules and regulations.

Which of your readings is 'close to being out of range'?

[5219 in reply to greygoose]

Thank you, things are a bit clearer now.

My TSH is 0.34 which is said to be out of reference range. My serum free T4 level was 14.3pmol/L . This blood test was 3 months after a rise of 25mcg Levothyroxine every other day. I now take 125mcg every day and have a blood test booked for next week.

[greygoose in reply to 5219]

Is the TSH all your doctor tests? If so, she has no idea if you are adequately medicated. It is very, very wrong to dose by the TSH. Insist you want your FT4 tested - and FT3 if possible. 125 mcg levo is not much of a dose for someone who has no thyroid.

[5219 in reply to greygoose]

Yes it is. I know it always frustrates me that they should test a lot more to get a true picture of ourselves.

I will do. I did wonder how much Levothyroxine I should be on.

[greygoose in reply to 5219]

Well, you won't find out from just the TSH. Your doctor obviously understands nothing of how it all works.

How do you feel on 125 mcg, anyway? The protocol should be to keep increasing at six weekly intervals until all your symptoms are gone. The protocol does not include the TSH.

[5219 in reply to greygoose]

I feel better. I still have anxiety and weak muscles, painful feet but I assume I cannot do much abut that?

Where can I get the information of the protocol I can show my Dr?

[greygoose in reply to 5219]

Well, there probably is. It really does sound as if you're under-medicated. My feet were absolute hell before I was diagnosed! But, the treatment improved them greatly.

I think you'll have to ask that question in a new post - I'm sure SeasideSusie or SlowDragon have some links they can give you.

Oh, and it's not that important if the TSH goes below range. Sometimes it has to be in order for our FT4 and FT3 to be high enough to make us well. My TSH is non-existant, now.

[5219 in reply to greygoose]

Thank you, I feel I am getting somewhere at last. This is definitely a complicated condition.

I have been to physio, orthopaedics and podiatrists about my feet. Have been told to do exercises and stretches to no avail of any improvement. I just think I am wasting mine and their time.

Yes I will.

I have always thought that they should test more than my TSH.

[greygoose in reply to 5219]

It is and it isn't complicated. But, it's certainly not as simple as most doctors believe: prescribe levo until TSH somewhere in range, job done.

[pennyannie]

Hello 5219

No there isn't but that doesn't mean there shouldn't be.

I'm with Graves Disease diagnosed 2003 and had RAI thyroid ablation in 2005, and now manage Graves, thyroid eye disease and hypothyroidism, and I believe there should be guidelines for the treatment of Graves Disease in primary care.

Graves is an autoimmune disease and as such, it's for life. Your thyroid is the victim of an attack by your immune system, and since the thyroid is such a major important gland, when it comes under " attack " the symptoms experienced can be life threatening.

Removing the thyroid by either surgery, or RAI ablation, doesn't solve the problem of your immune system attacking your body, but removes the target of the attack, the thyroid, rendering the patient hypothyroid and needing thyroid hormone replacement for life.

The issue that is unique to Graves is that we can have a suppressed or very low TSH for many years, possible indefinitely, post thyroid removal/ablation, and if you doctor is managing you on only TSH blood tests it will not be show a true picture of the effectiveness of your thyroid hormone replacement. Graves patients have TSI/TRab antibodies that sit on and drive down the TSH, giving the appearance of overmedication and suppression when in fact, the patient may, most probably, be very undermedicated.

Initially you were diagnosed overactive as the antibodies were sitting on your TSH driving you into hyperactivity. To solve the problem the thyroid was destroyed, so the feedback loop broken, as now there's no thyroid gland for the TSH to stimulate. Those antibodies can still be sitting on your TSH driving it down, but since the thyroid is no longer functioning, it's of no consequence, and if used in isolation as a thyroid blood test it means diddly squat.

Graves patients should be monitored and dosed on T3 and T4 blood test results with the intention being to get both these vital hormones into range and to an acceptable level of wellness to the patient, which generally sees the T3 and T4 in the upper quadrants of the ranges.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4- Levothyroxine + 10 T3-Liothyronine, with T3 said to be about 4 times more powerful than T4. I just think it makes common sense that when there has been a medical intervention and the thyroid either surgically removed, or burnt out in situ with RAI, that both these essential hormones should be on the patient's prescription for if, and possibly when, needed.

Some people can get by on T4- levothyroxine alone, some people simply stop converting, at some point in time, the T4 into T3 which is the hormone the body runs on, and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of wellbeing acceptable to the patient.

Conversion of T4 into T3 happens within the body and this can be compromised if your core strength of ferritin, folate, B12 and vitamin D are not optimal.

After RAI it is known that some people fair better with T3 and T4, dosed independently, or switched to Natural Desiccated Thyroid the original thyroid hormone replacement used for over 100 years until the 1960's and the advent of blood tests, ranges and Levothyroxine.

I became very unwell about 8 years after my RAI treatment, but found no help or understanding with the NHS system. I have learnt of my situation backwards, and thanks to this amazing site I am now turning things around for myself and buying my own thyroid hormone replacement and self medicating.

There are 3 books that I found very useful:-

Graves Disease A Practical Guide by Elaine Moore - this lady has the disease and went through RAI in the late 990's. She found no help so wrote a book to help others, and has now a well researched and respected Stateside website covering all aspects of the disease.

Tired Thyroid by Barbara S Lougheed - another lady with the disease who went through RAI and she now runs a blog under the same title heading and talks much of the overreliance of the TSH test for Graves patients.

Your Thyroid and How To Keep It Healthy by Barry Durrant-Peatfield. This doctor has hypothyroidism himself and his book is an easy read, insightful, sometimes funny, but so necessary to know, as since we don't have this amazing little gland, we need to know all that it does so we can try and compensate accordingly.

Sorry, I've gone on a bit, hope it's helpful, and gives you some food for thought on your journey to optimal thyroid hormone replacement.

[cazmania7 in reply to pennyannie]

I ordered those books when you replied to one of my posts and just finished tears behind closed doors. I want to give it to everyone on the planet lol. It was brilliant. Thank you.

[pennyannie in reply to cazmania7]

Yes, that's strange really as I don't usually refer to it anymore.

Though it was the very first book I read, and identified with.

Glad you read it, though don't remember the referral - I'll blame it on the

brain fog - though have to say, that has improved since starting NDT.

[5219 in reply to pennyannie]

Thank you so much. You have made things a lot clearer. Drs just don’t have that information. They just go by levels and not how you feel. That’s not right in my mind.

Thanks again

[pennyannie in reply to 5219]

Yes, it is a massive learning curve in so many ways.

I've managed to turn things around for myself, and you can too.

I thought my doctor must know more than me - I'm dyslexic and reading is a challenge, and when very unwell, my memory and cognitive functions were very compromised.

But, I'm now self medicating having removed the stress and anxiety of having blood tests that never reflected how I was feeling and then being called a conundrum by my doctor and offered anti depressants.

[5219 in reply to pennyannie]

My Dr was reluctant to raise my Levothyroxine again but I said to her that if I felt unwell I would go back to my original dose. I feel a lot better so Drs need to realise that we know our bodies and if we don’t feel good then the levels are wrong.

How insensitive.

[cazmania7]

Why don’t you post your test results for the guys on here to look at? They might have some tips and advice for you 😀

[5219 in reply to cazmania7]

My last test for Serum free T4 level was 14.3pmol/L and TSH level was 0.34 miu/L. Have another blood test next week 2 months after a rise in Levothyroxine. I am feeling better for the rise.

[cazmania7 in reply to 5219]

Cool. I think an important one is your T3 though. I had to pay or a private test to see my T3

[5219 in reply to cazmania7]

Yes I have to pay for tests that my surgery don’t do.

[pennyannie in reply to 5219]

Do you have the range for the T4 ?

It generally reads about 12-22 ? - some numbers like that -

and yes, it's necessary to look at the T4 in conjunction with the T3.

T4 needs to be high in it's range as then proportionally your T3 should be high.

Most people seem to do well with a ratio of around 4/1 - T4 to T3.

[5219 in reply to pennyannie]

The range for T4 was 9-19

[pennyannie in reply to 5219]

Ok then so 14.3 in a range of 9-19 works out at just over 5 points in a range of 10 = 50%. through the range - so there is plenty of room for a dose increase in Levothyroxine which in turn will increase your T3 and you will feel better than you do now, which is better than you were feeling before the last dose increase.

This whole procedure can be repeated again after a 6/8 week period and then if still with hypothyroid symptoms, the blood test repeated and the Levothyroxine increased again until you reach the upper limits of T4 range at 18/19.

However your doctor is not looking at this - she is looking at and managing you on your TSH which at 0.34 is very close to the bottom of the range ( usually 0.27 ) .

She is paid to follow the guidelines, and the guidelines want results inside the ranges, and they certainly don't like a suppressed TSH as then the NHS dogma is recited of A/F and osteoporosis.

They do not seem to know or understand the implications of Graves Disease and believe once the thyroid is ablated or surgically removed the antibodies have all miraculously disappeared into thin air and the " disease " has disappeared. You are treated as primary hypothyroid, and no account is taken as to how and why you got there, let alone the implications of the surgery, or RAI on the rest of your body.

[5219 in reply to pennyannie]

Is there any written evidence of this I can show my Dr?

my blood pressure and heart rate are good and I am taking Vitamin D to help with osteoporosis.

[pennyannie in reply to 5219]

Doctors work to guidelines and there are no guidelines specifically for Graves Disease. We are treated as primary hypothyroid and doctors seem to dose and medicate to a TSH reading. The laboratories will generally only do a TSH reading - there doesn't seem to be any special dispensation for those with Graves Disease.

There are many articles on here regarding the current thyroid testing system :-

Professor Toft 's - Thyroid hormone replacement - a counterblast to guidelines : being just one of several articles that comes to mind:

I have to say, it didn't help me that much, and I just became more stressed and anxious the longer I stayed in a system that wasn't working for me.

[Hidden]

I suggest you look up this article which seems to suggest that not only is there a different range for those without a thyroid, but that Levothyroxine is likely to leave them with residual symptoms: ncbi.nlm.nih.gov/pmc/articl...

[SlowDragon Administrator]

When you get bloods retested important to get FULL thyroid and vitamin testing

Vast majority of people on here forced to do this privately

Full thyroid test is TSH, FT4, FT3 plus vitamin D, folate, ferritin and B12

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are most popular tests

thyroiduk.org/tuk/testing/p...

Important to do all thyroid tests as early as possible in morning and before eating or drinking anything apart from water beforehand. This helps give highest TSH

Last dose levothyroxine 24 hours prior to test

Many people find TSH is low on levothyroxine. Most important results are FT4 and FT3. As long as these are within range you are not over treated

Come back with new post once you get results

[5219 in reply to SlowDragon]

Ok thank you. I am hoping my Drs surgery will do all of them.

[SlowDragon Administrator in reply to 5219]

GP should test vitamins.

NHS almost never tests FT3 these days, yet it’s the most important test to do

Testing TSH, FT4 and FT3 together privately if you can’t get it done by NHS