Have no thyroid,since levo reduced to 100mcg now feeling awful with hypo symptoms

[ilgsds]

Hi, some advice please, I have no thyroid (RAI 45 years ago) my last TSH was .01 so GP panicked and reduced my Levo to 100mcg, from 125 mcg Now I feel awful on this lower dose and have full blown Hypo symptoms, so asked my GP for Endo referral, they wrote back to say my symptoms of hypothyroidism must be due to non compliance, (what a nerve!)I am furious as I DO take my levo properly ( I am a trained nurse for heaven's sake) I know I function best with a TSH of about 1 or 2. What now if Endocrinologist still refuses to see me? I think this is a failure of duty care, bordering on negligence or am I over reacting? I must add that I have osteoporosis which is probably why GP reduced the Levo - but without a thyroid I have no Calcintoin which prevents bone loss by inhibiting the Osteoclasts, !!! Really need some advice please, thanks!

[Lalatoot]

Unfortunately the medics see hypothyroidism as a straightforward, simple fix that can be undertaken at GP level. Hyperthyroidism, on the other hand, is seen as being life-threatening and is an automatic referral to an endo.This means that unless the hypothyroid patient presents with some way off symptoms or some unusual presentation of the problem, then the endo will likely refuse any referral that they think should be dealt with by the GP. Which is what has happened to you.

As a result many on here self-test and self-medicate.

You could suggest to the GP that the hypo symptoms might be due to low vitamin levels and start stirring the pot by asking for vitamin testing. You could suggest that they consider your FT4 and Ft3 levels as they are the thyroid hormones. And you could baffle them with your knowledge of the workings of bone loss as you may know more than them. In other words, be pushy/pro-active as much as you feel you can.

[tattybogle]

Hi . i've been in a similar position. had been on125 for a few yrs.

was reduced from125 to 112.5 due to fT4 becoming inexplicably over range (alongside TSH of 0.05, but that's usual for me)

That first reduction was perhaps OK in the end, but it took about 8 weeks for me to stop feeling rubbish following the reduction.

However GP wanted further reduction to 100mcg as even though TSH rose to 0.09 , my fT4 had oddly risen even further.

Eventually i agreed. but after a few weeks on 100mcg i became totally constipated , it felt like my digestive system just went to sleep, and i generally felt awful.

next bloods showed TSH risen to 0.5, and fT4 had fallen a little , but was still over range.

Anyway, i informed GP of the constipation etc issues and said i'd be putting dose back up to 112.5mcg .

result....( after a heated discussion)He's put a note on my records that i understand the 'risks'. He said ." i'm not going to argue with you, and i don't want to make you ill, do you want to go back to 125 ? "

I've stayed on the 112.5mcg for a year to see how it goes and what happens to TSH /fT4 , and it is a definite improvement on 100mcg.

Last test on 112.5mcg gave TSH 1.9 which is unusually high for me, and fT4 had fallen further., but is still over range.

The jury is still out on whether i'll put it back to 125mcg.

But anyway, maybe you could ask to go back up a bit to 112.5mcg and see how that feels , 12.5mcg was enough to make a difference to me. Just because tablets are made in 25mcg increments it doesn't mean that's the right adjustment. It can be too heavy handed.

Also ask for fT4 to be tested to see where it's at.

The 'non compliance' thing is insulting i agree . I had the same when my fT4 inexplicably went up after the dose reduction.

I do understand why they need to ask this when results don't do as expected ,but they too often just use assume it's the reason and use it as a 'get out clause' to avoid looking any further for an explanation.

It's quite likely an Endo would not agree to see you at this point with these results, they see it as GP' territory.

Have you had a blood test done on 100mcg yet ?

[ilgsds in reply to tattybogle]

getting bloods done next week, and GP consultation later when results are in, will post results

[SlowDragon Administrator]

Many people, on levothyroxine, when adequately treated will have suppressed TSH ...it’s irrelevant provided Ft3 is within range

Do you always get same brand levothyroxine.....which brand

What vitamin supplements are you currently taking

Strongly recommend getting FULL thyroid and vitamin testing done

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common on levothyroxine and especially if dose is reduced inappropriately

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

[e-mail]

See reply by Diogenes in this post

healthunlocked.com/thyroidu...

the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing

academic.oup.com/jcem/artic...

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.

20% Patients with no thyroid can not regain full health on just Levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

Come back with new post once you get results of full testing

[ilgsds in reply to SlowDragon]

Thank you so very much, I feel so much better having read your comments, and motivated to get things done.Have arranged to get bloods for TSH done and an appt to dscuss results with with GP. but I already know from how I feel that my TSH ill be at least 5!!. Also does the fact that my mother, father, aunt , and niece all have thyroid issues - would that make it more likely that I will be listened to?

[SlowDragon Administrator]

Osteoporosis can be due to LOW Ft3.....due to UNDER medicated....not necessarily over medicated

Osteoporosis

thyroidpatients.ca/2018/07/...

How to get TSH as high as possible

thyroidpatients.ca/2020/01/...

Don’t rely on TSH

ncbi.nlm.nih.gov/pubmed/309...

Canadian Thyroid association

Low TSH

thyroidpatients.ca/rational...

Obviously very important to maintain optimal vitamin D levels

Do you currently supplement vitamin D, magnesium and vitamin K2

When were vitamin levels last tested

Recommend wearing a Fitbit or equivalent to record resting heart rate and activity levels too

[pennyannie]

Hello Ilgsds and welcome to the forum :

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2, and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

If your RAI was because of Graves Disease it is known that a Graves TSH is unreliable as we can have antibodies attached " sitting on ' the TSH receptors, which maybe why we went hyperactive in the first place.

Sadly in primary care it does seem that the TSH is all you may get measured and dosed on, irrespective of how you came to be hypothyroid and if living without a thyroid, and or an auto immune thyroid disease the TSH is the least important test to be actioned.

The TSH test was originally designed as a diagnostic tool to help in the diagnosis of hypothyroidism, and was never intended to be used for a patient once on any form of thyroid hormone replacement.

Additionally, the TSH is also the least reliable measure of anything and as your feedback loop is now broken as there isn't a thyroid to stimulate, it is essential that you are dosed and monitored on your T3 and T4 blood tests with aim of these two vital hormones being balanced within the ranges and we generally feel better when our levels are in the top quadrant of the range.

T4 is a storage hormone and needs to be converted by the body into T3 the active hormone which is said to be about 4 times more powerful than T4 and read the average person needs to utilise around 50 T3 daily just to function.

Your ability to convert the T4 into T3 can be compromised by low ferritin, folate, B12 and vitamin D, inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing.

So whilst we can't hold back time we can do something about the obvious vitamin and minerals to enable us to keep our core strength strong and solid.

The thyroid is a major land responsible for full body synchronisation, including physical, mental, emotional , psychological and spiritual wellbeing , your inner central heating system and your metabolism.

Some people can get by on T4 only, some people simply find that T4 stops working as well as it once did, and some people simply need both T3 and T4 dosed and monitored independently to restore balance and wellness.

Personally I just think if there has been a medical intervention and the thyroid surgically removed or burnt out in situ with RAI that both T3 and T4 should be on the patients prescription for if, and probably when, both these essential hormones will need to taken and at a high enough level acceptable to the patient to restore health and well being.

As you will see from the above since loosing your thyroid you have lost your own T3 thyroid production and not replacing this vital hormone equates to around a 20% reduction in your overall health and wellbeing. I'm sure given time, like me and many other thyroidless people, you have made do and compromised but ultimately found yourself with a reduced ability to just stand still.

P.S. I'm with Graves post RAI thyroid ablation in 2005 and having failed to be prescribed anything other than T4 - Levothyroxine I am now self medicating with full spectrum thyroid hormone replacement and much improved.

[ilgsds in reply to pennyannie]

can I ask what full spectrum thyroid hormone replacement you are using to treat your thyroid issues?

[pennyannie in reply to ilgsds]

Hey there ;

I am taking Thyroid S which is manufactured and shipped from Thailand.

There are USA sites also where you can purchase NDT without a prescription.

I think in the first instance you need to see if the NHS will pick up the " tab " as we would all prefer to be " in the system " and with no worries of sourcing our own medications.

NDT - product brand Armour - is meant to be available through the NHS on what is called a "named patient only prescription " and your doctor needs to support your request to have this medication and apply to your local CCG authority for sanction and finance.

Thyroid S has been difficult to purchase this past year, but understand there is now a new supply route though I haven't had need to go down this route yet.