GP tested FT3! Advice needed, Graves now Hashi's?

[Tuttare]

My gp got the lab to add on FT3 yesterday and as I have hypo symptoms she said she will prescribe 25mcg levothyroxine. However, I have Graves disease and am worrying that this will make me go hyper again or, do I now have Hashi’s?

History: Diagnosed with Grave’s and thyroid eye disease 1996 18 months after birth of son. Block and replace for 3 years. Relapse 2001 after 2nd baby, carbimazole for about 2 years.

2014 diagnosed with Coeliac disease and pernicious anaemia. 2015 gallbladder removed. 2016 feeling unwell, TFT “normal,” May 2017 almost had a thyroid storm! On carbimazole again until end 2020. Now been off ATD for 12 months.

Thanks to advice on here I had my first blood test ever at 8.30 am, no food/drink!

4/1/22: TSH: 4.0 (0.35 – 4.94)

FT4: 11.8 (9.0 - 19.0)

FT3: 4.6 (2.9 - 4.9)

TPO positive

Folate: 12.4 (3.1 – 20) -improved since August

Vit D: 102 nmol/L

Some previous test results (same ranges) all done around 11am-midday after eating:

9/9/21: FT4 11.8

Anti TSH receptor antibodies: 0.67 (<2.0)

TPO positive ( lab won’t give a number, when I lived in north west they did!)

19/8/21: TSH: 2.3

Folate 5.6, vit D 80.......I thought these were low so have been supplementing and self injecting B12 for last 3 months (has helped), I also take K2, magnesium, zinc and selenium.

5/5/21 (Discharged back to gp after these results):

TSH 2.2

FT3 3.5

FT4 11.6

Trab 1.51 (<2)

2/2/21:

TSH 2.3

FT3 4.4

FT4 11.8

Trab 1.34

I’m 56 yo, 5’4”, weight has been stable for a couple of years approx. 60kg. I have anxiety, fatigue, air hunger, cold hands/feet, eyebrow loss, ibs, dizziness, slight goitre worse in morning, recently palpitations in evening.

So do I have Hashi’s and is it safe for me to take levo? The gp said she would try to ask the lab to add on the Trab as they refused this time and would get back to me. Thank you!

[PurpleNails Administrator]

Could you please add lab ranges for your results.

Even if you didn’t have Hashimoto’s you are currently hypothyroid and that’s what replacement levothyroxine treats - the low thyroid levels. So yes it’s safe for you to take. I would be pushing for fairly frequent monitoring as you are concerned about possibility of going hyper. 6 weekly after any dose adjustment and earlier if symptoms alter.

Positive TPO or TG antibodies usually confirms Hashis although strictly speaking it confirms autoimmune issue as they can be present with Graves.

Graves is confirmed by positive TRab or TSI. TSH receptor antibodies (TRAb) Combines the measurement for - Thyrotropin binding inhibiting immunoglobulins (TBII) (blocking) & Thyroid Stimulating Immunoglobulin (TSI) (stimulating or activating) & the “neural” which don’t have a name other than neutral or sometimes abbreviated to N-abs for short.

In theory if blocking antibodies exceed stimulating which would manifest as hypothyroid. Becoming hypo after years of hyper Graves isn’t rare. It’s often referred to a Graves Burnout.

You can also have both conditions.

[Tuttare in reply to PurpleNails]

Thank you so much for replying. I did put the ranges on the 4th Jan results but to save time didn't add them to others and don't know how to edit my post! Anyway all the ranges are: TSH (0.35 - 4.94), FT4 (9.0- 19.0) and FT3 (2.9 - 4.9). Glad it's not my imagination that i'm hypo! I forgot to add that I have had wrist pain for ages and am guessing that is due to being underactive too. I now feel more confident to start on levothyroxine and be closely monitored. Is 25mcg the standard starting dose? Thanks

[PurpleNails Administrator in reply to Tuttare]

Yes you did put range, I missed that, are you certain the same range applies to every test? As they do vary between labs, so you always need to add the correct range with each result.

You can edit by going to “more” and “edit” at end of each posting.

Your most recent results:

TSH: 4.0 (0.35 – 4.94)

FT4: 11.8 (9.0 - 19.0) 28%

FT3: 4.6 (2.9 - 4.9) 85%

Your TSH is high a typically healthy level being around 1. Being previously hyper can result in unreliable TSH. So FT4 & FT3 more relevant.

I’m a bit surprised your GP has agreed to prescribe you replacement hormone. When levels are “in range” GPs often don’t look further & many say unless TSH reaches 10 / FT4 below range treatment not required. (Which is wrong)

With high TSH, low FT4 (& positive TPO) is see exact why medication has been offered.

What is unusual is the disproportionately higher FT3. It may be that your body is compensating & preserving your FT3 levels. introducing Levo will hopefully balance this out. However given your hyper history it’s even more important you are closely monitored as if the FT3 goes higher you would be over range.

When you feel well how do your results compare? When your were discharged you FT4 was also low side but comparing results it’s the FT3 which is higher.

Do you recall if your Graves was FT3 dominant? Or FT3 exceptionally high.

50mcg is standard starter dose (unless, infant, elderly or have cardiac issues). The replacement hormone ends up replacing what thyroid produces not top up. It’s likely increases will be required.

Dr maybe being overly cautious because levels are still in range.

[Tuttare in reply to PurpleNails]

On my online portal the gp has written a note to the lab saying 'request FT3 because patient had T3 thyrotoxicosis in past.' I was wondering why FT3 was quite high. Maybe she is being cautious.During my telephone consultation yesterday I thought it was a bit odd that she said she would leave me a prescription for 25 mcgs but then she added that she would increase my dose to which I replied 'I'm not taking anything!' Unless she got me muddled up with another patient? I'll ring the surgery tomorrow to see if she has and grab it before she changes her mind!

[Tuttare in reply to PurpleNails]

I forgot to add that I honestly can't remember when I last felt well to compare any results. Maybe in late 2014 when my anaemia had been corrected, I'd had my loading doses of B12 and was on a gluten free diet I felt better but I was only having an annual TSH test then. Everything went wrong when I had my gallbladder removed in June 2015 and I still regret it (I wasn't even in much pain but was persuaded by consultant).

[greygoose in reply to PurpleNails]

Anti TSH receptor antibodies: 0.67 (<2.0)

But surely the TRAB are negative, there. So she didn't have Grave's. That's the way I see it, anyway.

[PurpleNails Administrator in reply to greygoose]

Maybe they were positive 25 years ago?

Block & replace 1996 - 1999 (& TED diagnosis)

Carbimazole 2001 - 2003

Possible Thyroid storm 2017

Carbimazole 2017 - 2020

Approximately 9 years of antithyroid medication is a worrying thought If misdiagnosed.

[greygoose in reply to PurpleNails]

Maybe they were, yes. But I would want more details to confirm the 'possible thyroid storm'. One doctor's 'thyroid storm' is another doctor's 'slightly raised levels'.

[Tuttare in reply to greygoose]

Hi greygoose, I did have a positive TSH receptor antibody level in July 2017: 4.5 (0.00 - 1.80) and in June 2020 my new endo said my level was just above 2 (<2).

So does this confirm that I do have Graves even though I don't know if antibodies were tested/present in 1996?

[greygoose in reply to Tuttare]

I would think it does, yes.

[PurpleNails Administrator]

All your recent TRAb are negative. Were they confirmed positive when diagnosed? You were on block and replace so natural low levels wouldn’t become apparent. If carbimazole was commenced on low TSH rather than FT4 & FT3 you may have had lower thyroid level than realised. Do you remember what dose of medication you were taking?

[Tuttare in reply to PurpleNails]

Hi, thanks again for your reply, my head is spinning atm! In 1996 I've no idea how they diagnosed me or whether they tested antibodies. I'm afraid in those days I trusted the "experts!" I think I may have been on 40mg of carbimazole and levo (can't remember dose) but whenever I complained that my eyes were bad they would increase the carbimazole! When I said I would like another baby in 1999 the endo said 'ok, stop carbimazole/levo and I then only had TSH checked by gp. When I was pregnant again in 2000 I had 'at risk' on my notes and assumed they were monitoring thyroid levels. When my baby was 3 months old I was told I was 'fine' and discharged (I thought this was a bit premature because the first time I was thyrotoxic took over 12 months post birth to occur). About a month later I saw a homeopath who took my pulse which was 145bpm and told me to see gp as she thought I was hyperthyroid. Gp did test (must only have been TSH?) said it was 'normal' then I had to wait a month to have retest when he phoned me to say levels 'were off the scale!'(by which time I was extremely unwell). I can't remember starting dose of carbimazole 2nd time but sometime in 2003 when I was on 5mg per day I was told by an endo that I had been on carbimazole 'far too long and was now underactive.' He told me to stop treatment, not to have any more babies and I would be ok! I then had annual TFTs by gp and stupidly assumed the were doing the full lot and never questioned 'normal' results.

Fast forward to 2014 when I was so anaemic the gp told me she thought I had cancer but it turned out I am Coeliac (only took 49 years for that diagnosis!) I was so furious that I'd never been screened as it is genetically linked to Graves that I began asking for blood results to be printed off. I've found some old ones:

22/09/2014: TSH 3.20 ((0.30-5.50)

15/10/2015: TSH 2.66 (0.30- 5.50)

13/10/2016: TSH 2.69 (0.30- 5.50)

3/05/2017: Thyroid peroxidase Ab conc: 251 (0.00 - 33.90)... Gp put me on 20 mg carbimazole pd

22/05/2017: TSH <0.10(0.30-5.50),

FT3- 5.9 (0.00-7.00),

FT4- 14.6 (11.50- 22.70) at this point I was taking 20mg of carbimazole per day

24/07/2017 TSH receptor antibody level: 4.5 (0.00-1.80)

This was tested at my request by gp because after having carbimazole dose cut by half by endo to 10mg pd I had 'rebound' hyper symptoms. The endo had told me 'there's no point testing antibodies'!?

23/10/2018 TSH 3.6 (0.30 - 5.50)

FT3: 4.3 (0.00-7.0)

FT4: 15.1 (11.50- 22.70)

I'm still on carbimazol at this point, can't remember dose but I was so fed up with hypo symptoms (especially sore joints) that I reduce my dose myself to eod and ended up only taking 2.5mg eod. The endo didn't object because my levels were 'normal' and my 'gout' that she told me I had disappeared!

ALL OF THE ABOVE TESTS WERE TAKEN LATE MORNING/AFTERNOON after food so may not be accurate.

In 2019 I moved from Wirral to Cornwall and had to wait months to speak to an endo feeling underactive the whole time. I think I was on 5mg per week split into 2 doses every 3/4 days .

It's 12 months since I stopped.

Btw ranges on my first post are all the same because they were done in the same lab.

Phew, that was long! Hope it makes sense!

😀

[PurpleNails Administrator in reply to Tuttare]

Your TSH has been higher than it should for a long time and I think you have been hypothyroid. My guess if the 5mg carbimazole, especially weekly wasn’t necessary at all. The level of carbimazole reduces production, being on it too long doesn’t cause hypothyroidism, being on too high a dose does. Stop the medication the thyroid overproduces again. If your specialist is implying taking it too long damaged the thyroid they are mistaken.

I’m afraid it is entirely possible you were never tested for Graves antibodies at the time, and low TSH alone was enough convinced Doctor your doctor you had had Graves. Doctors also associate Thyroid Eye Disease with Graves and even now don’t accept its possible to have it without hyper graves & Trab formation although I’ve read a great deal about it and it can occur without them. (See my profile and my battles on this)

My dad had Hyper in the 1970s and “partial” thyroidectomy. He has the longest scar I’ve ever seen and it was preformed within weeks. He wasn’t told cause of the hyper or offered any alternative treatment option. So he didn’t know carbimazole existed when I was prescribed a few years ago and thinks I’m very lucky I can be treated with a radioactive pill instead of operation. (Which I’m not intending to ever have)

Doctors aren’t much better now.

The range on the FT3: 4.3 (0.00-7.0) is just plain plain wrong.

Are you using airmid or some other sort of App? Administrators can over ride the lab reference range and widen the “normal” range (extremely confusing & dangerous).

[Tuttare in reply to PurpleNails]

I really appreciate the time you've taken to reply to my posts.I just copied my 2018 FT3 result 4.3 (0.00 - 7.00 pmol/L) from a print out I had from my old surgery. The ranges are a mystery to me!

I must admit I became a bit obsessed about getting my thyroid antibodies down to normal in my desperation to never have another relapse, as I'd read that most people relapse when they are taken off anti thyroid drugs too soon. So I probably stayed on them too long and then moving house and the new gp not getting my notes delayed things. The pattern with me seems to be puberty, pregnancy and menopause combined with stress as triggers. I'm sure I had TED as a teenager and I now know I was definitely coeliac as a child.

My mum had thyroid nodules removed about 30 years ago because she had a goitre. Then she was left with no follow-up and I've often wondered if she has Hashimotos.

I told her to get a full thyroid check a couple of years ago (she's 86). She was told it was normal so they won't check her antibodies.

I've had Radioactive iodine suggested to me a couple of times and I have to remind them it would make my Thyroid eye disease worse. I had a flare-up of my TED in 2017 when I was hyperactive even though I had been told in 1996 it would burn itself out.

I've learned so much from the lovely people on this site. I'm determined to feel my best one day! I will never trust a doctor again without doing my own research first!

Best wishes.

[PurpleNails Administrator in reply to Tuttare]

Another mis fact is that TED worsen with hyper levels. Many find the reverse is more true and many report it’s not diagnosed after treatment has begun and levels are at there lowest.

Doctors don’t treat the antibodies they treat by reacting to the FT4 & FT3 levels or if they lack knowledge to TSH. Often antibodies are only tested once to confirm diagnosis. Antibodies fluctuate all the time. Once a positive result you always have the condition. The antibodies are cleaning up the foreign substances so they react to issue not cause of it.

[Tuttare in reply to PurpleNails]

Hi PurpleNailsJust a quick update. I spoke to my surgery asking if my prescription was ready and they told me that the gp has written to me to say that the lab said I don't need my receptor antibodies tested because they were tested in September and my blood test on 4th Jan shows my thyroid levels are normal and I don't need another test for 12 months!

I thought it was too good to be true that she was so easily going to prescribe levothyroxine and it looks as if she assumed I was already taking it. She wants a face to face consult with me next Wednesday so I suppose I'm going to have a battle to convince her my levels are not 'normal!' Any ideas what I could say to persuade her I am hypothyroid? Thanks!

[tattybogle in reply to Tuttare]

You could try sticking this graph under her nose:healthunlocked.com/thyroidu... tsh-levels-in-healthy-people-with-no-known-thyroid-disease

%'s of 'healthy' people who have TSH at various levels ... as you'll see '4' is really not very 'normal' at all ... it's pretty uncommon to have TSH anywhere near 4 When you see this graph it's patently obvious that the real 'normal' is about '1 ish' ,and '2ish' is 'probably fine' , but '4 ish' is 'a bit suspect' to say the least...

You could point that your TSH has gone up sharply since being 2 ish in august.. indicating your hypothalamus/pituitary certainly seem to think you've not got enough thyroid hormone. (they produce more TSH in response to inadequate fT4/3 levels)

Ok WE know that the higher TSH since august could well be because you did this latest test at 8am , when TSH is likely to be higher anyway , but most GP's won't know this .. so there's no need to enlighten her at this time if it doesn't suit your purpose .

(were your previous TSH tests done midday /early afternoon when TSH would be lower ?)

I suppose you could try saying that since it is well known that graves patients often have TSH that remains lower once it's been 'reset' during periods of very high T4/3 .. and given your past history ... maybe they could assume your TSH 'ought' to be higher than 4 if it hadn't been messed with in the past by your graves antibodies.

Also i vaguely remember something about graves antibodies 'sitting on' TSH keeping it low , and making it unreliable in future .. and you do still have some TRab, not overrange anymore , but still more than most people would have. I think i read this in something from Tania S.Smith Thyroidpatients.canada

but i might have remembered that wrong ... * edit, had a look now and not sure if it applies, but here is what i was thinking of :

thyroidpatients.ca/2020/04/... tsab-antibody-tsh/

thyroidpatients.ca/2020/04/... remissions-and-fluctuations-trab/

thyroidpatients.ca/2019/07/... tsh-can-be-very-misleading-during-thyroid-therapy/

I suspect that since you are 'complicated' .....if you sound confident enough that you know more about it than she does, you might get her to give you some levo just to get rid of you .

[Tuttare in reply to tattybogle]

That's fantastic info, thank you so much! I'll take it along with me next week and let you know how I get on, and yes, ALL my past tests were done after 11am! 😀

[pennyannie in reply to Tuttare]

Hello Tuttare :

You have Graves Disease which does tend to wax and wane throughout one's life :

If you don't know of the Elaine Moore Graves Disease Foundation website you might like to dip in :

Graves is a poorly understood and badly treated auto immune disease, generally said to be triggered by stress and anxiety, and each Graves patient's journey different and unique to that patient.

Graves antibodies are either simply identified as TSI (a thyroid stimulating ) or TR ab ( a thyroid receptor blocking ) antibody but it isn't that simple as at any one time you may well have either antibody circulating, or both, which can cancel each other out and leaving you, the patient, feeling neither hyper nor hypo.

Graves antibodies can " sit on " TSH receptors sites, driving down your TSH and maybe the reason why in the first instance your thyroid hormone production became overactive.

It is essential that your are dosed and monitored on your T3 and T4 blood tests and not the TSH as it is a very unreliable measure of anything especially in someone who has Graves Disease.

Graves can " burn itself out " and the likely result of that is hypothyroidism.

Maybe a scan could confirm whether you still have any thyroid function or not ?

[Tuttare in reply to pennyannie]

Hi pennyannie

Thank you, I did look at Elaine's site a few years ago which is probably where I learned not to rush into having my thyroid removed or destroyed as it is the victim of the disease not the cause. I'll have another look to refresh my memory.

I've certainly had a lot of stress the past couple of years with moving house etc and I often feel hypo in the mornings and agitated/hyper in the evening and then I can't sleep.

I had a scan on my thyroid in 2014 prior to my Coeliac and pernicious anaemia diagnosis because I kept choking on drinks and the gp thought it was thyroid related. The scan was normal apparently. (The choking disappeared once I had B12 injections).

I'll see what my new gp says about a scan. 🙂

[pennyannie in reply to Tuttare]

OK then - yes, I only found Elaine Moore after my RAI thyroid ablation when becoming very unwell about 8 years on in around 2014/2015.

Look to Elaine on the section on the more holistic ways of treating Graves and what you can do for yourself in respect of stress and relaxation techniques.

Once Graves is triggered you will be more prone to further episodes.

There are people on this forum who are on long term AT medication, and just pop a pill, when they feel the need - seems the best sensible option to me, as you say, quite rightly we are dealing with an AI disease and that currently there is no cure.

Just for reference :

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

pubmed.ncbi.nlm.nih.gov/338...

There is also a very interesting article by Professor A Toft - check out his credentials - written in his retirement year from the NHS entitled :

Thyroid Hormone Replacement - A Counterblast To Guidelines : 2017 :

It is on this website in full somewhere and the whole article totally validates where we all are with thyroid hormone treatment in this country and so true.

I now self medicate, having failed to get anything other than a TSH and T4 in primary care, and refused both NDT and T3 - Liothyronine by the endo who was a diabetes specialist -fighting the system simply exacerbated my symptoms so I jumped ship in 2018 and haven't looked back and am so much better it beggars belief.

I am managing lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism and taking Natural Desiccated Thyroid.

[Tuttare in reply to pennyannie]

Thanks for the helpful info.I've never spoken to anyone else with Graves/thyroid eye disease before and it has been very lonely at times. I was nervous about doing a post (never having been on a forum before) but I'm so glad that I did! I've been blown away that so many people would be bothered to take the time to reply to me.

Thank you everyone!

I've been trying alternative therapies for years trying to 'fix' my autoimmune diseases (5 so far).

I have been to meditation classes and do yoga at home occasionally.

After my Coeliac diagnosis I'm convinced that the gut microbiome plays a large part and I was doing quite well until I stupidly had my gallbladder removed which wrecked my digestion even more.

When I had my graves relapse in 2017 I was dismayed, although I think the menopause played a large part.

I would prefer never to see a doctor again and wouldn't be surprised if I end up having to self medicate levothyroxine.

I'm sure I read on this site that certain brands suit people better than others. If my gp does agree to prescribe levothyroxine, do you happen to know what to ask for?

I can be lactose intolerant sometimes if my gut is playing up but other times I can eat cheese or cream if I don't over do it (probably lack of gallbladder I'm unable to deal with fat).

[pennyannie in reply to Tuttare]

Yes, you did read about certain brands of T4 and lactose intolerance :

I can't remember off the top of my head which ones, but do know that once on a brand that suits, you can now be prescribed on that particular brand only.

Keep us in the loop and you're not alone, with all this, and you've made a massive step forward just off loading on here.

[Tuttare in reply to pennyannie]

So I saw the gp who was very nice, said she doesn't know much about Graves' but her husband is an endocrinologist so she can ask him. In the meantime she gave me a prescription for 25mcg and said she would write to my former endo. I was given the Teva brand which gave me terrible gastrointestinal side effects, so I stopped after four days, and had a gap of a few days until the pharmacy got me the Wockhardt brand.

Then the gp rang to say she had heard back from my endo who says I do not need levothyroxine because my test results are normal but I can have HRT!

She said my symptoms are subjective and we've all had a difficult couple of years. I'm surprised she didn't blame climate change!

When I asked about the medical exemption form she replied that she couldn't possibly sanction an exemption because when it comes to the audit she would be asked why she has prescribed thyroxine for a patient whose tests are normal.

I've been told to have a blood test in six weeks and if my TSH goes below 2 she will not allow that because it's dangerous.

It's too early to tell if I'll feel better on 25mcg but does anyone ever feel better on such a low dose or am I wasting my time (and money)?

[pennyannie in reply to Tuttare]

Hello again :

Well, I don't have a crystal ball :

I would think you would be better off having an appointment with this endocrinologist rather than be dosed and monitored third hand.

I too am in Cornwall and paid once for help and understanding,, several years after RAI thyroid ablation at the same hospital where all my medical treatment had been undertaken and told " Go on the web - buy your own thyroid hormone replacement and I'll happily see you again to monitor your progress " ???

So, already several tens of pounds lighter in my bank balance from this one appointment I started reading up for myself and ended up self medicating when refused both NDT and T3 through the NHS. as I resented paying further, from my single person pension, to be told precisely what ?

I don't think 25mcg T4 is going to help and it reads as though you doctor is already out of her depth - mine was too - though declined her copy of Elaine Moore's first book that I purchased for her in good faith as she knew I was dyslexic.

Just a thought - has Hashimoto's AI thyroid disease be ruled out as it can run " in tandem " with Graves ?

Your current symptoms are that of hypothyroidism so I think I'd focus on optimising your vitamins and minerals and if all else fails maybe trial some thyroid hormone replacement yourself and see how you go ?

[Tuttare in reply to pennyannie]

Thanks.Yes, I agree, I think my gp is out of her depth. I think that her initial instinct, after seeing my blood results, that I need thyroxine was correct but now this has been contradicted by the endo, so she won't go against them.

She appears to have no interest in finding out if I have Hashimoto's.

It'll be interesting to see what the levels in my next blood test look like.

The saga continues 😁

[pennyannie in reply to Tuttare]

I needed to pay to get my surgery to run a T3 and T4 blood test and they flatly refused to run the vitamins and minerals so now I I go it alone and pay privately, now just yearly, to get my results more for the vitamins and minerals than where my T3 sits, as I know, I'm doing ok in that department.

The private companies run the main thyroid antibodies as standard on a full thyroid panel and Medichecks do also run a Graves antibody blood test if that is still of interest to you.