Help with results please: Hi everyone I recently... - Thyroid UK

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Help with results please

kazb1966
kazb1966

Hi everyone I recently have been having severe palpitations and slight chest pain I spoke to a GP at my surgery who suggested we do some bloods, initially she only wanted to test for TSH but I managed to convince her to do my T4 and T3 she reluctantly agreed I have no thyroid after having our RAI in 2016.

My results are

TSH 0.01 (0.35-5.00)

T4 17.6 (9.00-22.00)

T3 4.9 (2.4 - 6.00)

My haemoglobin estimation come back abnormal, results were 148 (115-145) but I have no idea what haemoglobin estimation is my red blood cells was also slightly elevated

It has taken me a long time to find a balance with levothyroxine and I’m hoping she doesn’t start to mess around with my dosage. I have just been for an ECG and awaiting results and I’m due to have a Novacor heart monitor fitted on Monday she seems to be blaming the palpitations and chest pains on levothyroxine but I’m unsure why levo thyroxine would just start to be a problem all of a sudden. Any helps on results would be appreciated

Thankyou x

66 Replies
SeasideSusie
SeasideSusieAdministrator

kazb1966

Your thyroid results are fine. FT4 is 66.15% through range and FT3 is 69.44% through range so there is no problem with your hormone levels. Don't let them tell you your low TSH is a problem, it's the FT3 that tells us if we are overmedicated and many of us need a low TSH to achieve decent FT4 and FT3 levels.

Heart problems can come out of nowhere and doesn't necessarily mean it's connected to your thyroid medication.

Hi I did a reply at the very bottom of answers I received. I hope I have done that right? Maybe it should be that I reply individually but really not sure 🤞🏻

Your fT3 and fT4 taken together are slightly high but would not explain your cardiac problems or low TSH. I would leave them as they are. The TSH is not reflecting your thyroid hormone levels, this could be because it was suppressed for a long time. If you had Graves' it could be that you still have TSH stimulating antibodies (they cause Graves') and they can feedback to the pituitary and so suppress TSH. In any event they should disregard your TSH result as it isn't reflecting your thyroid hormone levels.

I would focus on your heart not thyroid hormone. If you have a heart problem it might help to reduce your levothyroxine a tiny bit, it might help but I don't think levothyroxine is the cause of the problem.

I am a patient not a doctor and I know next to nothing about the heart.

SlowDragon
SlowDragonAdministrator

Have you had change in brand of levothyroxine?

What vitamin supplements are you currently taking

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

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

Low vitamin levels are extremely common on just levothyroxine

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)

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/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

kazb1966
kazb1966 in reply to SlowDragon

It seems I may not have replied properly in my thread to you @slowdragon

SlowDragon
SlowDragonAdministrator in reply to kazb1966

When you put name in reply you need to click the name on drop down menu that appears when you put @ before name

kazb1966

kazb1966
kazb1966 in reply to SlowDragon

Also when i put @ in I don’t get any drop down menu come up at all

SlowDragon
SlowDragonAdministrator in reply to kazb1966

You need to put @ followed by members name - make sure no space between @ and name

kazb1966

kazb1966
kazb1966 in reply to SlowDragon

I am doing exactly that but honestly get no drop down menu

SlowDragon
SlowDragonAdministrator in reply to kazb1966

It’s at bottom page....often need to scroll downwards to see it

Are you on phone or tablet.....might be different on phone

kazb1966
kazb1966 in reply to SlowDragon

I’m on an iPhone but whether I use blue reply box or the larger box at the bottom of page neither pick up on the @name

SlowDragon
SlowDragonAdministrator in reply to kazb1966

kazb1966

Click in reply box

Type @slowdragon

I can't highlight my own name (interesting)

I have just replied via phone (android)

Thankyou so much for quick replies. I take selenium, magnesium/vit d spray, and zinc.

I fasted did not take levo that morning as suggested by you all on here (always do it that way) when I first started in levo ; years ago I tried a few brands which didn’t suit me until I went on Teva and now suits me although I hear a lot of people on here do not get on with

Teva.

As my thyroid has now been killed off with radioactive iodine I am assuming that I am making no hormones at all, having read that the pituitary gland sends signals to the TSH which in turn makes the T4/T3. I don’t really understand exactly how it all works but assuming I am relying purely on levothyroxine T4? I have hashimotos. Thankyou

SlowDragon
SlowDragonAdministrator in reply to kazb1966

How much vitamin D are you taking

When was vitamin D last tested

Remember that magnesium and vitamin D tablets must be four hours away from levothyroxine

Magnesium supplements best taken afternoon or evening

Vitamin D mouth spray doesn’t need such long time gap

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

kazb1966
kazb1966 in reply to SlowDragon

I take the better you spray vit d with k2 just had vit D tested and it’s come back still very low I think considering I supplement

Result was 67

SlowDragon
SlowDragonAdministrator in reply to kazb1966

How much were you taking.

One spray is only 1000iu

With Hashimoto’s it’s common that we need HIGH DOSE

If trying to increase levels then you may need 5 or 6 sprays per day (5000iu-6000iu)

Perhaps 2-4 sprays per day as maintenance dose, once you get levels up to around 80nmol and around 100nmol maybe better better

Jimh111

I don’t understand what is meant by ft3/ft4 taken together? Would you mind explaining for me please. Thankyou

I think he's saying that overall these are on the high side - if so, I strongly disagree! SeasideSusie has given you the ranges, and you are good in range and nowhere near being over-medicated. How do you feel?

Fuchsia-pink Thankyou for your reply. I understand now. I thought I had read on previous posts that people say the levels should be on the higher side to feel well which mine appear to be so I’m happy with that. I struggled for such a long time after my radioactive treatment to kill off my thyroid to find the right balance in feeling ‘normal’ however when I have felt unwell I have automatically blamed it on my thyroid or lack off or just the side effects of taking levothyroxine. At about the time I started to have thyroid problems I also hit going through the menopause but both doctors and endocrinologist always pointed the finger at thyroid. Menopause symptoms and thyroid symptoms seem to be so close together that given my levels from my recent bloods appear to be good perhaps all my other symptoms point towards menopause symptoms even though I haven’t had a period for three years. I did try to talk to a GP at my local surgery regarding HRT but in all honesty didn’t feel at all confident they really knew what to prescribe and again blamed it on thyroid. Most recently are severe palpitations and this nagging chest pain however I also have joint pain muscle pain burning feet brain fog, my body temperature is awful at night and extreme fatigue, some days just don’t feel motivated and weight gain like I’ve NEVER had. I’m sure you would agree that just looking at those symptoms it’s hard to tell whether it’s thyroid related or menopause.

Actually, given your thyroid results and my own experience with a difficult menopause I'd say the menopause drop in oestrogen levels is your problem now. It can cause havoc and it can take time to build up.

It's a whole new area to learn. If you are on FB, I recommend you join a private group called Menopause Support Network. You can learn so much just reading the files and the threads. The best website around for up to date information is menopausedoctor.co.uk. Everything you need to know is there and loads of helpful podcasts and video talks too. That's where I'd start looking now if I were you.

jimh111
jimh111 in reply to kazb1966

Both fT3 and fT4 contribute to thyroid hormone action and feedback to the pituitary. In the healthy population as assessed by your blood tests fT3 would average out at 4.2 and fT4 at 15.5. Of course everyone would vary around these figures but the pituitary tries to keep fT3 around mid-interval and TSH reflects the combined action of fT3 and fT4. So, for example, someone might have an fT3 of 3.8 and and fT4 of 16.7 or an fT3 of 4.9 and fT4 of 13.4. If on the other hand they had fT3 or 3.8 and fT4 13.4 they would tend to be a little hypo or if fT3, fT4 were 4.5 and 16.7 they would tend to be a little hyper. Of course, everyone differs but in general if both fT3 and fT4 are starting to go above or below average they may be a touch hyper or hypo.

In the healthy population the pituitary reflects the combined contribution of fT3 and fT4 and so is a good marker for overall thyroid status - even if fT3 and fT4 are in interval TSH can indicate the early signs of hypo or hyperthyroidism. The problem occurs when this system breaks down, when TSH is not reflecting fT3 and fT4 as it should. This is happening in your case, with your fT3 and fT4 we might expect TSH to be e.g. 0.5 or 0.2 but certainly not 0.01. Your TSH is not responding appropriately. Hence, your 'axis' is not working and we can't use TSH as a marker for thyroid status. This happens frequently after Graves'. Sometimes the TSH recovers after several months to a year or two and sometimes it doesn't.

The reference intervals show where 95% of the healthy population lie. The distributions (especially TSH) are slighly asymetric but most healthy people have a TSH around 1.0 to 2.0 and fT3, fT4 near mid-interval. When taking levothyroxine fT4 needs to be in the upper half to bring fT3 around mid-interval, this pushes TSH a little below 1.0. But in your case TSH is not responding normally and so should be ignored.

The fact that your fT3 and fT4 are a little higher than the average person is not something to worry about, there are complex reasons why you may need this. I don't believe this slight elevation (from the average) would affect your heart.

Perhaps “taken together” means tested at the the same time? They are well balanced and not over.

If you use blue reply button immediately under post you reply to the responder (they automatically get notified) if you reply at the bottom of replies in the text space you post on our own thread.

kazb1966
kazb1966 in reply to PurpleNails

Thankyou very much purplenails I’ll be sure to respond using the blue reply button. Can you still see all info I’ve put in my thread?

PurpleNails
PurpleNails in reply to kazb1966

Yes, all members can see the entire contents of the tread & every reply. It just so members get notified on their own replies. You can also “mention” a member to notify them. Use the @ icon where you typing and the name of the person. Matching names are listed. Pick the right name and it will appear in blue, they also receive notification. kazb1966

Thankyou @PurpleNails. I did try to reply using blue reply but keep getting red exclamation symbol

Thankyou

pennyannie
pennyannie in reply to kazb1966

Hello Kazb

If you go on the Thyroid UK website there is a list of symptoms for hypothyroidism and I do believe some of what you have described above to be signs of under medication.

Your feedback loop is broken as you have had RAI thyroid ablation which is generally a treatment option for Graves Disease, though you do say you have Hashimoto's , but either way, these are both AI thyroid diseases though Hashimoto's ceases when there is no thyroid gland to attack, whilst Graves Disease is for life.

It is essential that you are dosed and monitored on your T3 and T4 levels and not a TSH :

T3 and T4 should be balanced in the ranges, which they are, but maybe you need a dose increase in Levothyroxine to take both T3 and T4 slightly higher through the ranges and reduce certain symptoms you describe above.

Primary hypothyroidism caused by RAI is said to be more difficult to treat as the gland is slowly burnt out in situ and there isn't an actual timeline when this is complete as all bodies react differently to this toxic substance.

It is known that RAI trashes vitamins and minerals, and ferritin, folate, B12 and vitamin D all need to be at optimal levels for Levothyroxine to work effectively and successfully convert within the body into T3 which is the active hormone that the body runs on.

T3 - Liothyronine is said to be about 4 times more powerful than T4 with the average person using about 50 T3 daily, just to function.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 + trace elements of T1, T2, and calcitonin so as you will see you have " lost " your own thyroid production of T3 which represents around 20% of your overall wellbeing.

The conversion ratio of T4 into T3 is 1 / 3.50 - 4.50 T3/T4 : with most people preferring to come in under 4 and if you divide your T3 into your T4 your conversion ratio on Levothyroxine is coming in at 3.59 :

Some people who haven't a working thyroid can get by on Levothyroxine only, some people simply stop converting the T4 into T3 at some point in time, and some people simply need both T3 and T4 thyroid hormone replacement.

Personally I think if there has been a medical intervention and the thyroid surgically removed or ablated with RAI that both T3 and T4 should be on the patient's prescription for if, and probably when, both hormones will be needed to restore wellbeing and give the patient back a level of wellness that gives them back " their you " :

I have Graves Disease and had RAI thyroid ablation but found overtime Levothyroxine stopped working as well it had done previously, for me, and having been refused both NDT and T3 on the NHS I now self medicate and am much improved.

kazb1966
kazb1966 in reply to pennyannie

Thankyou for such a detailed reply. I had no idea that hashis ceases once the thyroid gland has gone. I had follow up scans after RAI back in 2016 and it was confirmed it was completely dead. I also had no idea that levothyroxine could eventually stop working, that fills me with dread! No chance of getting T3 from the NHS. The Dr who gave me the RAI thought it may be Graves that caused my hyper state (treated with carbimazole for 2years with no luck) then my last Endo said it was Hashimotos Auto immune disease. I wish they would all sing from the same hymn sheet

SlowDragon
SlowDragonAdministrator in reply to kazb1966

Levothyroxine doesn’t “stop working “

But it’s extremely important to regularly retest vitamin D, folate, ferritin and B12

Very important to have GOOD levels of these vitamins

Frequently necessary to supplement virtually continuously to maintain optimal vitamin levels

Getting full thyroid and vitamin testing is next step

kazb1966
kazb1966 in reply to SlowDragon

Thanks @SlowDragon. I’m relieved levo doesn’t stop working.

I don’t supplement for folate and ferritin, any suggestions?

You say full thyroid test next, what else do I need please apart from TSH T4 and T3 that had just been done?

Thankyou

SlowDragon
SlowDragonAdministrator in reply to kazb1966

You need to get vitamins tested

Ask GP or test privately

Vitamin D needs testing twice year

Never ever supplement iron or ferritin without full iron panel test for anaemia first

Come back with new post once you get results

At moment you only need vitamins tested.....but if testing privately, it’s likely cheapest option will include TSH, Ft4 and Ft3 anyway

£79 via Medichecks, often cheaper on Thursdays

Thriva offer just vitamin testing I think

See if you can get GP to test first - full iron panel test for anaemia including ferritin. Vitamin D. Folate and B12

SlowDragon
SlowDragonAdministrator in reply to kazb1966

Many people after RAI cannot manage on just levothyroxine

You might need small doses of T3 prescribed alongside levothyroxine

But FIRST step is to get all four vitamins OPTIMAL

Frequently with Hashimoto’s (or Graves’ disease) we need to be on absolutely strictly gluten free diet

You don’t need any obvious gut symptoms

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Only make one change at a time.....starting with getting vitamins tested and supplement to bring to GOOD LEVELS

Then looking at trial strictly gluten free diet

SlowDragon
SlowDragonAdministrator in reply to kazb1966

palpitations and this nagging chest pain however I also have joint pain muscle pain burning feet brain fog, my body temperature is awful at night and extreme fatigue, some days just don’t feel motivated and weight gain like

Burning feet is usually peripheral neuropathy caused by low B vitamins

Night sweats low B12

Chest pain low iron/ferritin

Get full thyroid and vitamin testing done privately via Medichecks or Blue Horizon

pennyannie
pennyannie in reply to kazb1966

Hey there ,

Sorry if I confused you - Levothyroxine doesn't stop working, but people can stop being able to convert it :

Well, if you had Hashimoto's Disease you shouldn't have been on Carbimazole and definitely not lost your thyroid this way.

We are where we are, and living without a thyroid can be a challenge.

Optimal ferritin, folate B12 and vitamin D will help maintain your core strength and help optimise the conversion of the T4 thyroid hormone replacement.

A full thyroid panel including these essential vitamins and minerals would be a good idea so to rule in or out any supplements that maybe necessary.

I still take thyroid hormone replacement, but Natural Desiccated Thyroid which contains all the same known hormones as a humans gland. It is pig thyroid dried and ground down into tablets referred to as grains and contains trace elements of T1. T2. calcitonin and a measured dose of T3 at 9 mcg and a measured dose of T4 at 38 mcg per grain.

jimh111
jimh111 in reply to pennyannie

It might cause concern to say levothyroxine stops working although many Graves' patients find it no longer works for them. Sorry about the semantics! What I think happens is that patients find they no longer benefit from levothyroxine like they used to, the levothyroxine still working as it always has.

I could speculate a possible explanation: -

As well as stimulating the thyroid to secrete hormone TSH also promotes T4 to T3 conversion. During hyperthyroidism TSH is suppresed and if this goes on for several months it can 'down-regulate the axis', that is the pituitary no longer secretes as much TSH as it should. An additional aspect is Graves' disease is caused by TSH receptor antibodies that stimulate receptors in the thyroid to make more hormone. These antibodies pretend to be TSH. Since these antibodies look like TSH they also promote T4 to T3 conversion, so although TSH may be very low (or zero) the antibodies will do the conversion stimulation that the missing TSH would normally do. So the patient does fine on levothyroxine.

About a year or so after RAI or surgery the Graves' antibodies decline. From then on there is no TSH and no antibodies to promote T4 to T3 conversion leading to reduced conversion and the onset of symptoms. So, at this stage levothyroxine 'stops working' and the patient needs some liothyronine. This is my hypothesis of what happens and it seems perfectly reasonable. Certainly something is happening and I haven't seen a better explanation.

pennyannie
pennyannie in reply to jimh111

Jim - thank you for this explanation - yes it does make sense -

In laywomen' s terms - for me - it felt as though my pilot light needed replacing :

Many thanks :

I have 3000iu spray and just spray once.

Another helpful member suggested that once my thyroid has gone (due to RAI) I no longer have hashimotos disease so with no thyroid and no hashimotos I’ve no idea what I medically have now

SlowDragon
SlowDragonAdministrator in reply to kazb1966

The red Better You spray is actually 1 spray = 1000iu

Read the details on back....you need 3 sprays per day to get 3000iu

(It’s a bit misleading...........especially as the Better You green spray is 1 spray = 3000iu )

kazb1966
kazb1966 in reply to SlowDragon

Oh crikey Thankyou so much just assumed it was one spray when I saw 3000 on front

SlowDragon
SlowDragonAdministrator in reply to kazb1966

I agree .....misleading

I had Hashi, Graves and RAI in 2013. Since 2014 had always palpitations. Several cardiologists said that levo do this. Last week i found an endo who gave me t3. Now i am on t4/t3 and i hope all this will gone soon...

Like jimh111 said you may still have the TRAB antibodies and sometimes the Graves may come back. There is an article about that:

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

My antibodies are always high and GP said will always be the case. My last SE Thyroid peroxidase an cnc was 39 (0.0-5.6)

I would add that all my cholesterol levels have definitely increased since I have been on levothyroxine whether that is relevant or not I have no idea

ilenuca
ilenuca in reply to kazb1966

Not the TPO but TSH receptor antibodies (TRAbs), characteristic of Graves' disease

SlowDragon
SlowDragonAdministrator in reply to kazb1966

High cholesterol suggests you are not adequately treated thyroid wise

High cholesterol linked to being under medicated

Getting all four vitamins optimal, before looking at getting thyroid levels retested in 2-3 months after ....plus trying strictly gluten free diet

kazb1966
kazb1966 in reply to SlowDragon

Thankyou again I’ll try to get all vitamins in a higher range and perhaps pay privately for them to be tested. 3 months? Or should I leave it longer?

SlowDragon
SlowDragonAdministrator in reply to kazb1966

Work on improving low vitamin levelsAdding one supplement at a time

Then try strictly gluten free diet

6-8 weeks after being on strictly gluten free diet get FULL thyroid and vitamin testing done

Oh wow another test , think that Will be like getting blood out of a stone from GP, if I managed to persuade them to test for this what does this tell me exactly that I definitely have Graves’ disease and not hashimotos. So confusing when one dr (that gave me RAI) mentioned Graves and endo says Hashimotos . Honestly it’s no wonder brain fog is so common and I would mention a completely different endo just laughed at both of those!!

SlowDragon
SlowDragonAdministrator in reply to kazb1966

Testing TSI or Trab antibodies would confirm if you had Graves’ disease

Often GP unable to order this test, usually via endocrinologist

Look through all your previous blood tests, you may have had it done

Graves Disease antibodies test (requires blood draw, can’t be done via DIY finger prick test)

medichecks.com/products/tsh...

Good info on Graves’ disease

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

healthunlocked.com/thyroidu...

High TPO antibodies and high TG can be due to hashimoto’s or Graves’ disease

If TPO or TG thyroid antibodies are very high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

It’s possible to have Graves’ disease and Hashimoto’s at same time

Low vitamin levels are particularly common with Hashimoto’s and Graves’ disease

Gluten intolerance is often a hidden issue

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

pennyannie
pennyannie in reply to kazb1966

Can I just add, whether you have Graves or Hashimoto's since you do not have a thyroid any raised antibodies of proof of both, or either, doesn't change the treatment options.

Mainstream medical do not understand how to control or reduce, the antibody component of either disease and once first tested to give a diagnosis of either or AI thyroid disease simply follow the relevant guidelines and procedures.

I was diagnosed Graves in 2003 and given RAI thyroid ablation in 2005 :

I was fine on Levothyroxine for several years until around 2013/14 - details on my profile page if interested :

I purchased Elaine Moore's first book Graves Disease - A Practical Guide thinking maybe that Graves I had received treatment for had come back again - only to read it never really went away and that it seems to be a stress and anxiety driven autoimmune disease.

Elaine Moore has Graves and went through RAI thyroid ablation in around the late 1990's and finding no help with her continued symptoms and ill health, started researching this poorly understood and badly treated autoimmune disease herself.

Elaine has now become somewhat of an authority on all things " Graves " and has a world wide following on her website, and researched much into the AI component of thyroid disease for which mainstream medical have no answers.

I now manage lingering Graves, thyroid eye disease ( caused by the RAI among other things ) and hypothyroidism and since switching to both T3 and T4 thyroid hormone replacement I am much improved and have my life back.

I also supplement adrenal glandular as RAI is known to be taken up by these glands and I do need to supplement ferritin, folate, B12 and vitamin D on a daily basis along with my Natural Desiccated Thyroid.

Antibodies wax and wane - personally I wouldn't waste my time finding out whether or not you now have Graves or Hashimoto's as you are post RAI thyroid ablation and dealing with the life limiting symptoms of hypothyroidism unless optimally medicated.

kazb1966
kazb1966 in reply to pennyannie

I did read through your profile this morning and couldn’t agree more with your very last paragraph. Get RAI and go live your life is how I feel. Funny you should mention eye disease as the day I say with Dr who saw me prior to my RAI I asked him about RAI affecting eyes as I had read something on here and he completely dismissed it. Trouble I have is I read the replies on here for which I’m really grateful but feel so overwhelmed and although I don’t consider myself to be a stupid person I just don’t get it sometimes. The eye disease frightens me. I recently went through a period of feeling like glass (gritty) was in my eyes and my vision is slightly blurry but that’s when I don’t have my glasses on or I’m feeling tired. I guess at 55 maybe it’s just ‘my eyes’. Given my thyroid results appear to be roughly where they should be and that my T4 seems to be converting to T3 relatively ok I was thinking my symptoms but just have been menopausal but now I just don’t know. Obviously I’ve no idea if the palpitations are thyroid or menopause or a bit of both. Chest pain I had no idea until I posted on here. My usual GP who I could book to see pre-Covid always put his hands up when he really wasn’t sure about the next step and was always happy to work with me and listen to what I had read on this site whereas now we are going through Covid you don’t get a choice as to what Dr calls you back so when I called the other day re-the chest pains I got a very snotty doctor that was only interested in my TSH. It really was only when I stood my ground that she agreed to test T4 and T3

SlowDragon
SlowDragonAdministrator in reply to kazb1966

Dry gritty eyes common on levothyroxine

Preservative free eye drops can help,

amazon.co.uk/Evolve-Hyprome...

pennyannie
pennyannie in reply to kazb1966

Hey there :

Well, you've started to get better by simply coming on here and sharing some of your upset - very many of us feel similar - as you will see above as there are over 114K members of the charity, Thyroid UK, who support this amazing forum.

On the Thyroid UK website you will find so much information and also private companies who run the appropriate thyroid blood panel and vitamins and minerals.

Start building vitamins and minerals where needed, and don't worry, as once with the results you just post them up on here with the ranges and you will receive considered opinion on anything that needs to be actioned.

Don't worry - simply start by reading other people's Q & A and it will all sink in despite that brain fog which we all have had and totally " get it " .!!!

kazb1966
kazb1966 in reply to pennyannie

Thankyou so much 🙂

pennyannie
pennyannie in reply to kazb1966

If you are using any eye drops, lotions and potions, to ease your dry gritty eyes, please ensure that they are all PRESERVATIVE FREE :

kazb1966
kazb1966 in reply to pennyannie

Just bought some funny enough but not sure they are preservative free. Are the preservatives harmful to the eyes. Do you have a suggestion to which I should buy?

pennyannie
pennyannie in reply to kazb1966

It should say so on the packaging and or PIL :

Preservative free means you can use them as much as you need and there will be no build up of product to block your glands.

If with preservatives, these can build up and block the tiny glands at the base of the eyelash, and then that causes other issues, commonly referred to as blepharitis, as was my experience.

There are many products to choose from, some you may be able to get on prescription.

As long as without preservatives it all becomes personal, and you may find over time that you may need to switch products.

There are some like single dose phial water droplets and at the other end heavier, greasy substances more suited to overnight use : I found I had to resort to wearing prescription glasses as my contact lenses became too uncomfortable to wear.

kazb1966
kazb1966 in reply to pennyannie

My bottle says isotonic buffered solution with HPMC 0.3% and PHMB. It does say use as often as needed so would hope no preservatives 🤞🏻

pennyannie
pennyannie in reply to kazb1966

I recognise the first set of letters and think that stands for Hypromellose which is found in most eye ointments - I can't comment - maybe contact the brand in you are concerned.

like i said before you may have hashi and graves together, like i do

kazb1966
kazb1966 in reply to ilenuca

Thankyou. Does that test you mention give a definitive result to Graves?

ilenuca
ilenuca in reply to kazb1966

I don t say you have Graves now, after the RAI therapy but sometimes the desease may return.

You should have done that test (TRAbs) at the beginning of the disease

kazb1966
kazb1966 in reply to ilenuca

Sadly I had to rely on the doctors with tests at the beginning of me funding lumps and being hyper for 2 years. Ironically that’s when I felt my best! I honestly don’t think the first endo was interested in anything other than giving me RAI and even pushing surgery! Hindsight is a wonderful thing. I appreciate all your replies Thankyou

ilenuca
ilenuca in reply to kazb1966

how much levo do you take now?

kazb1966
kazb1966 in reply to ilenuca

137.5

pennyannie
pennyannie in reply to kazb1966

Hey there :

There is room for an increase in Levothyroxine :

Your conversion of T4 into T3 is good and an increase in T4 should result in an increase in T3 and hopefully the relief of some symptoms :

Most people feel better when in the top quadrant of the ranges and over 75% through so you may like to try this option first and foremost.

Thankyou very much. If my TSH should be ignored why on earth is that the only thing the GP was ‘happy’ to test.

I’m gonna try and read through your reply a couple of times to seem if my brain can understand. I’d like the confidence to be able to throw this info at the GP.

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