Levothyroxine. n hypothyroid .

[Radgey]

I was diagnosed with graves back in 2015. I had radio iodine treatment .and felt fine started training ..But GP was getting angry and said shouldn't be doing it .till levels were measured.gave bloods .came back said thyroid had switched over .as started to put bit of weight on...cut long story short ..I now have hypothyroid .been untreated for 2yr .was due operation that got cancelled due to dangerous thyroid levels . specialist said couldn't understand how I was stood Infront of him should b dead or in coma .. according to levels .been back on levo around 8wks now .still no blood tests to check levels .what am I susposed to do when gp doesn't understand .or listen .I've ended up with severe depression anxiety and nervousness that doesn't seem to be fading away.i often left t self medicate myself if feeling better or worse .have to virtually beg t get tfts . I'm at a loss ..suffer weight loss on levo's..I currently take 150 daily .but no regular blood tests .does anyone have any ideas I'm at a loss .thankyou .

[SeasideSusie Remembering]

Radgey

Are you in the UK (maybe add your country to your profile)?

been back on levo around 8wks now .

Do you mean you've been on Levo before and it was stopped and you've now been prescribed it again? If so why was it stopped?

What were the test results (plus reference ranges) which resulted in you being put back on Levo?

still no blood tests to check levels .what am I susposed to do when gp doesn't understand .or listen

Ring the surgery and ask receptionist to book you in for thyroid function tests as you understand guidelines state that retesting should be done after starting Levo. Here is the guideline if you are in the UK:

cks.nice.org.uk/topics/hypo...

Review the person and recheck TSH levels every 3 months after initiation of LT4 therapy and adjust the dose according to symptoms and TFT results. Consider checking FT4 in addition if the person has ongoing symptoms on treatment.

Aim to resolve symptoms and signs of hypothyroidism.

Aim to maintain serum TSH and FT4 levels within or close to the normal reference range.

If symptoms persist, consider adjusting the dose of LT4 further to achieve optimal wellbeing, taking care to avoid over-treatment.

and this one:

nice.org.uk/guidance/ng145/...

1.4 Follow-up and monitoring of primary hypothyroidism

Tests for follow-up and monitoring of primary hypothyroidism

1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.

1.4.2 Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.

Adults

1.4.3 For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.

1.4.4 Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine.

I've ended up with severe depression anxiety and nervousness that doesn't seem to be fading away.

These are symptoms of hypothyroidism.

[Tlflom in reply to SeasideSusie]

Trust your gut. A doc that can't listen, will never be very good. I was stuck with one. I had to see 5 specialist in one year. I was proven correct 5xs. With perseverance, I now have a great care team. You deserve the same.

[SeasideSusie Remembering in reply to Tlflom]

I believe this reply is meant for Radgey not myself. I have tagged her now.

[SlowDragon Administrator]

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

Book an early morning appointment ASAP, ideally around 9am and last dose levothyroxine 24 hours before test

Request/insist they also test vitamin D, folate, ferritin and B12 vitamin levels

Being left extremely hypothyroid frequently results in low stomach acid, this leads to poor nutrient absorption and low vitamin levels

RAI invariably knocks out your own thyroid completely

Can not understand why or who left you without any levothyroxine.

[pennyannie]

Hello Radgey and welcome to the forum :

I too had RAI thyroid ablation but back in 2005 :

Graves is an auto immune disease for which there is no cure or treatment - all that has really happened is that now you haven't a fully functioning thyroid your T3 and T4 can't go over range again and cause you horrible hyperthyroid symptoms as now you are primary thyroid.

When primary hypothyroid and not optimally medicated you can experience equally disabling and horrible symptoms but as you have no fully functioning thyroid you can't ' go hyper ' but you might become over medicated and why you must be dosed and monitored on your Free T3 and Free T4 blood test readings and ranges.

A TSH seen in isolation which is generally all you get in primary care is not sufficient to dose and monitor on though am only too aware that in primary care this may well be all that has happened with an occasional T4 reading thrown in - which again isn't enough information to restore health and well being.

The RAI can take it's time but ultimately it fully burns out and fully disables your thyroid gland with you then needing to take daily some form of thyroid hormone replacement to manually replace your own thyroid function.

The thyroid is a major gland and responsible for full body synchronisation including your physical, mental, psychological, emotional and spiritual well being - your inner central heating system and you metabolism.

The thyroid is likened to being the body's engine, so while the RAI is slowly dismantling/disabling your thyroid gland - your engine and power source - you need to be taking thyroid hormone replacement to replace that being destroyed.

I was started immediately on 100 T4 - Levothyroxine and over a period of years this was adjusted up and down by a maximum of 25mcg and once settled on a dose, monitored in primary care with the yearly function test.

I became very unwell around 8-10 years after RAI - but let's park that there for now.

Can you share with forum members a little more information please ?

Do you have on line access to your medical records and can see any blood test results and if not, suggest you arrange this service as it is now your legal right to know your medical history.

What surgery was refused - do you have a copy of these blood tests ?

You say you are now back on T4 - Levothyroxine for 8 weeks - why was it stopped ?

You can arrange your own blood tests - if you into Thyroid UK - thyroiduk.org who are the charity who support this forum - there is a page of private companies who can run the relevant blood tests for you -

Medichecks and Blue Horizon - do I believe - cover most if not all of the country and you can arrange a nurse home visit to come and draw your blood for you - I do this, now just once a year as I'm much improved and looking after myself -

I think in the first instance we need to see a TSH, Free T3 and Free T4, antibodies, inflammation and ferritin, folate, B12 and vitamin D result and range.

No thyroid hormone replacement works well until your core strength vitamins and minerals - namely ferritin, folate, B12 and vitamin D are up and at optimal levels so this is the most complete blood test to run and from which we will be able to help and support you better.

Primary hypothyroidism cased by RAI thyroid ablation is said to be more difficult to treat :

RAI is known to trash vitamins and minerals :

RAI is known to trigger symptoms similar to fibromyalgia ad Sjogren's Syndrome.

I feel duty bound to share this research paper with you and thanks to this forum and some reading to self educate and advocate for myself I' m proof that it doesn't need to be as it might well be be currently :-

ncbi.nlm.nih.gov/pubmed/306...

[PurpleNails Administrator]

When you have RAI you should have blood test within 6 weeks & then at least every 3 months for 1 year.  It’s expected you become hypothyroid within this time & be put on levothyroxine replacement.  

Usually 50mcg is a starting dose & increase up by 25mcg with testing every 6 weeks.  It takes around 6 weeks for a new dose to settle.  Once stable you can be tested annually.   

Are you saying you were never started on levothyoxine until recently? 

How much levo have you been prescribed? 

If you are having issues re testing regularly you may want to consider private testing. 

NHS do not alway test FT3 and key nutrients folate, ferritin, vitamin D & B12.  

See list of companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies.  Others basic function only.  some also have discount codes available.

thyroiduk.org/help-and-supp...

You order test online the kits arrives via post sample taken by finger prick (extra fee for private venous draw). Post back and results available online quite quickly.  

Monitor my health offer - thyroid function (TSH, FT4 & FT3)  

Medichecks offer - thyroid advanced (function, antibodies & key nutrients) 

If you have the right information you can ensure your treatment is on track and you can achieve the right replacement.  If you are forced to rely on GPs / specialist which drag their heels & delay progress you are being kept unwell.

Any test GP or Specialist do arrange, make sure you obtain results & keep track of them.