Mystified by TSH

[Jacquid]

Hello thyroid gurus, would appreciate some advice on these new results.

Background info, I’m 65, diagnosed with Graves 2007, had block and replace for 18 months, been in remission since 2009. Endo and GPs consider me euthyroid. But I’ve had many symptoms since 2009, main one being fatigue but also muscle and joint pain, pain in my back (related to indigestion I think), high blood pressure, depression, tinnitus, carpal tunnel pain and insomnia.

I had a good period June 2010 when TSH was 1.1 (0.3-4.7) FT3 hit 5.2 (3.5-6.5) and FT4 was 11.3 (11-23) which I know is only 2.50% through the range, but I felt ok and makes me think I should aim for FT3 around 5.

Between Aug 2009 and Oct 2014 on no meds my TSH ranged from 0.86 to 1.8 (0.3-4.7) FT3 from 4.2 to 5.2 (3.5-6.5) and FT4 9.7-12.4 (11-23). It was about Oct 2014 I started educating myself on this site.

Following advice from this forum in 2014 I self trialled both NDT and Levo and felt much better on both, most problems resolved. I preferred Levo as I found NDT a little too powerful, @Pennyannie calls it turbo charged and I think that describes it well. I think I convert quite well and don’t need the extra FT3.

I stopped the meds around 2017 for a combination of reasons, some side effects on Levo (now think it was Teva, wasn’t aware of the probs with it then), couldn’t find a new source for Levo and increasing financial problems which meant I wouldn’t be able to keep up with the blood testing.

Spent from 2018 pursuing my lingering problems with GP, have been for a myriad of tests and kept asking if it could be my thyroid but I knew there was no chance of an NHS Levo trial with my TSH numbers. One GP agreed it was prob my thyroid causing the problems and asked did I know you can buy thyroxine and NDT on the internet. Hah.

Recent Medichecks results without any meds.

Feb 2020

TSH 1.69 (0.27-4.2)

FT3 4.44 (3.1-6.8)

FT4 15 (12-22) was surprised at this as never had a reading of 15 since treatment.

Dec 2020

TSH 1.76 (0.27-4.2)

FT3 4.28 (3.1-6.8)

FT4 12.7 (12-22)

I had intended to get back on the Levo for a while but couldn’t find a supplier, then Covid hit and everything was put on hold. Fast forward to June this year when I fell off the loft ladder and broke my heel bone. Had 3 hour op and no weight bearing for 12 weeks. In triage I mentioned I had Graves and the doc kindly said he’d request my TFTs to monitor. Turns out the labs do the same as with GP bloods at the hospital and only test the TSH if in range, which was 1.5 (don’t know the range). Obv in range tho.

Was pretty bad after the op, shock played a part I think but I was terribly weak and shaky but was a little better by week 6 and then I crashed majorly. Have never felt so bad, permanent headache, deafening tinnitus, carpal tunnel pain, weepy, sore pus filled spots on my face, hopelessly tired, weak, dizzy, and developed vision problems in one eye, flashing lights and blurring. Headed straight for the optician who did a thorough exam and said my eyes were fine. I was afraid of detached retina or tear or even TED developing. The foot however has healed well, eyeroll!

Over the last 6 weeks I did my research on here and came to the conclusion that I must have Central Hypothyroidism, that my TSH feedback loop is broken, possibly by Graves, and should be much higher.

But I’ve just done a Medichecks Advanced Thyroid test and these are the results. No meds, it’s a fasting test done at 8am. Kept off all supplements for a week, was taking small amount of vit D and a B vit once a week.

Sept 2021

TSH 2.81 (0.27-4.2)

FT3 4.4 (3.1-6.8)

FT4 14.7 (12-22) again high for me

CRPS 2.5 (0-5) mg/L

Ferritin 148 (13-150) ug/L

Folate 11.6 (2.9-14.5) ug/L

B12 89 (25.1-165) pmol/L

Vit D 62 (50-200) nmol/L

Thyroglobulin Antibodies 12.9 (0-115)

Thyroid Peroxidase Antibodies <9 (0-34)

I’ve never had a TSH this high. Could the op have caused this rise? Is the ferritin a bit high also? What does that mean? Is the B12 at an ok level? Am I reading negative for Graves antibodies?

Obv the Vit D is a problem, how much do I need to supplement and for how long?

My financial situation is much better now and I’ve managed to source some Levo and have started at 75mcgs (after having done the blood test), many problems instantly eased in the first few doses. I plan to retest in 8 weeks for thyroid levels. In 2015 I got up to 100mcgs Levo where my levels were

TSH 0.01 (0.27-4.2)

FT3 5.1 (3.1-6.8)

FT4 22.6 (12-22)

I felt good but wasn’t sleeping deeply. I weigh 65 kilos so 100 prob is my level but I got a bit worried about FT4 being over range and the TSH being a bit low.

Sorry about the long post but I would value your opinions

[greygoose]

Thyroglobulin Antibodies 12.9 (0-115)

Thyroid Peroxidase Antibodies <9 (0-34)

Am I reading negative for Graves antibodies?

Those aren't Graves antibodies. They're Hashi's antibodies. But, yes, they are negative.

Are you sure you really had Graves in the first place? Did you have the Graves antibodies tested on diagnosis: TRAB or TSI?

[Jacquid in reply to greygoose]

Hi Greygoose, thanks for reply.

The records from 2007 I have show Trab 10 but I have no range for that, also TBII 10 again no range and I'm not sure what that even is.

[greygoose in reply to Jacquid]

Without a range, it doesn't mean much.

I think TBII is just another test for Graves.

As to your query about the TSH, having Graves will have down-regulated the HPT axis, meaning that your TSH will take time to recover - if it recovers at all. That's not the same as Central Hypo, which is a problem with the Pituitary or the Hypothalamus due to a benign tumour or an accident or something like that.

[helvella in reply to greygoose]

TBII = Thyrotropin-binding Inhibitory Immunoglobulin

That is, it is the antibody which blocks the TSH receptor - not stimulates it. Although it apparently occurs in many thyroid patients, including some Graves' sufferers.

[greygoose in reply to helvella]

Thank you.

[Jacquid in reply to helvella]

Thanks Hellvella

[Jacquid in reply to greygoose]

Thanks Greygoose, wasn't sure if the accident had jolted the TSH into behaving normally, ha ha. Will have to see what it is at next blood test. Thanks for input

[greygoose in reply to Jacquid]

But the TSH isn't behaving normally. Or rather, you pituitary isn't. But, when I said 'accident', I meant a bang to the head. Did you bang your head?

[Jacquid in reply to greygoose]

I did actually, quite badly, at back of head, but had full body CAT scan at hospital which they said was ok. You thinking bang might have done something?

[greygoose in reply to Jacquid]

Not really, no. I think the low TSH is far more likely to be to do with the Graves and the down-regulated axis. But, of course, I'm not an expert.

[pennyannie]

Hello Jacquid :

Well a TSH over 3 is considered hypothyroid : though to get medical recognition it used to have to reach 5 and more recently the goal posts changed to 10 - which is ridiculous.

Anyway you are self medicating so not constrained currently by the NHS guidelines.

I read Graves can " burn itself out " but you need an independent blood tests for the Graves unique antibodies TSI and TRAB - which Medichecks do offer if you ask.

I'm with Graves post RAI thyroid ablation in 2005 and now managing lingering Graves, thyroid eye disease and hypothyroidism and self medicating with NDT and much improved and not as " turbo charged " as when I tried a synthetic T3/T4 combo - but likely my fault as that was my first experiment doing it for myself.

When treated on monotherapy with T4 only I found I was relatively well when my T3 came in at 5.50 but this necessitated my T4 going marginally over range, and with a TSH permanently stuck down at 0.01 - my T4 was cut down from 125mcg to 100 mcg.

I then found myself in an ever decreasing circle of wellness, but my TSH was kept in range, I was offered anti depressants, and there starts the beginning of my thyroid journey falling to the bottom of the well and my coming back up again having to self medicate and stay away from the medical mainstream.

Your inflammation is quite high which might explain your high ferritin :

Ferritin levels can also be elevated in people with hyperthyroidism.

I now aim to supplement and maintain ferritin of around 100, folate around 20, B12 active 75++ and vitamin D around 100 .

The accepted conversion ratio when on T4 only is 1 / 350 - 4.50 with most people feeling at there best when they come in at 4 or under.

To find your conversion ratio you simply divide your T3 into your T4 and on your Sept 2020 results I'm getting 3.34 - which show a fast metabolism and very good conversion.

How do you feel - a little hyper - as generally we see most people with a ratio going way out from 4 - though of course all of these people are hypothyroid, me included with a conversion ratio when on T4 only at 5.50 and very poorly.

Conversion of T4 into T3 can also be compromised by any physiological stress ( emotional or physical ) inflammation, depression, dieting and ageing.

Considering all you're been going through I'm sure you can also tick a few of those boxes though your conversion, as detailed above appears to be very good.

Interesting to read of your struggles with health since finding " remission " from Graves - it doesn't appear to be a " done deal " - does it, but why would it be when we are dealing with an auto immune disease, for which there is currently no cure.

[Jacquid in reply to pennyannie]

Hi Pennyannie,

Yes I've been reading your posts with interest as you're a fellow Graves sufferer. It is quite a journey isn't it and disappointing the medical profession can't seem to help more than they do. I was offered the anti depressants too, I just knew I wasn't depressed.

Ah, it was combination T3 and T4 that made you turbocharged, thought it was the NDT, I took too much NDT initially which was quite an experience!

I think TSH at 3 is regarded as hypo at my GP surgery but I couldn't have waited any longer to see if mine would rise further as I felt so ill, and I've read on the forum how some surgeries want 2 tests at that level to prove the case....I just couldn't have done it. So yes I'm outside of the system again, but feel so much better after only a week on T4. Hopefully this will continue but I'm very aware of how things can change when you have a thyroid condition.

Thanks for the info on the Medichecks Graves test, I didn't realise they did a specific one, I will order one straight away. And thanks for the calculations, very useful.

Any idea why my inflammation is high? Maybe because of the injury to my foot? Wasn't mentioned at the hospital when I was admitted, they just said I wasn't anemic.

[pennyannie]

Well I don't really know :

I've just looked at my last 4 year thyroid blood test results and my CRP fluctuates between 1.73 and 2.35 whilst my ferritin sits around 75 - 90 : and I'm RAI induced primary hypothyroid :

Unfortunately some of the NHS ranges are too wide to be sensible especially for those of us who are unwell and dealing with thyroid hormones that need good high levels of vitamins and minerals to help with the conversion the T4 into T3.

[Jacquid in reply to pennyannie]

Thanks Pennyannie

[pennyannie in reply to Jacquid]

Thinking on :

As I understand things Graves waxes and wanes throughout one's life so whether you test for the antibodies or not likely a waste of money as you know your body best.

There are people on this forum who have Graves and found " remission " - for want of a better word - and who are years into just taking the AT drug, when and if, their life stressors upset them and they sense their symptoms returning.

I believe these people are with predominantly the TSI " hyper " type symptoms that are well documented.

I think as you were predominantly with TRAB and blocking antibodies the continued symptoms experienced after " remission " are logical.

In my particular case I only ever experienced those " hyper " type symptoms when around half way through my treatment with the AT medication - Carbimazole.

I therefore presume I too had overriding TRAB blocking my thyroid hormones and this had been going on for most of my life, but never picked up by the medical mainstream.

Since RAI and now self medicating with full spectrum thyroid hormone replacement - NDT - I do not have the hypothyroid type symptoms I've struggled with and never been diagnosed with all my life.

I do believe my Graves is genetic, and I inherited Graves from my father as I know now I've been dealing with hypothyroid symptoms all my life and it was being attacked in 2003/4 that triggered the Graves to a high enough level that gave me a diagnosis of Graves and I was prescribed Carbimazole which solved the initial medical issue.

Once a Graves patient, always a Graves patient.

Antibodies effects on the TSH are still possible even if the most obvious victim, the thyroid gland, is subdued or eliminated.

Antibody fluctuations can occur in any patient who is susceptible to producing TRAB.

Just as you can't predict TRABs coming , you can't predict if or when they'll be going.

A person remains predisposed to forming TAB whenever their immune system response is triggered.

The TSH is the most misleading of all the blood tests especially when you are dealing with Graves antibodies which can sit on TSH receptors distorting the TSH reading.

P.S, Since you still have your thyroid and a fast metabolism, I can understand you're feeling turbo charged when you trialled full spectrum thyroid hormone replacement.

[Jacquid in reply to pennyannie]

Hi Pennyannie, yes I was thinking the same myself about the antibodies test, have read advice to Hashi patients on here - why test further when you know you've got them, does it make any difference. For me I think either the Graves has burned out my thyroid activity or the Carbimazole had a similar effect. I've never had a recurrence of hyper. I think I am hypo now.

I agree Graves is genetic, it's clear to me now that my dad had Graves, thin, active and insomniac when younger, but looking at photos when he was older, he is visibly ill (hypo by then), but at that time I didn't even know what a thyroid was. He was like that for years, fell asleep anywhere when he sat down. Graves must have burned out his thyroid. He had just been prescribed thyroxine when he died but they must have let him get to TSH10 before treatment. He died of a heart condition which may be related to the strain being hypo can put on the heart.

My Graves attack was def a result of stress at work, I ended up in a ridiculous situation where I was asked to do too much and with responsibility way above my pay grade. My natural anxiety (part of Graves as I understand) went through the roof. I had to take some time off work but made sure the reasons were logged with HR. On reflection I don't think my attack was too serious, by the time I took the Carbimazole (I resisted initially) my levels were coming down on their own, but I was still offered both RAI and a TT. Looking at my levels now it seems ridiculous.

The points you make about TRAB and TSI are interesting, I need to do more reading about this and TBII. I really had no problems with thyroid or hypo or hyper symptoms until my first attack, tho I was always warm and anxious and active and thin (not so much these days, ha) but I still don't feel the cold. One of first endos I went to see after B&R and I was still symptomatic said he wouldn't prescribe Levo because I wasn't wearing a coat in Oct. I was in the car.....so just rushed into the place from the car park. And not everyone has the same hypo symptoms...

Yes I think the TSH reading is of no use in my situation, even the guy who invented the test says it's being used in the wrong way by the NHS (read that somewhere). Whole system needs an overhaul if you ask me.....but no-one is asking me....ha

[pennyannie in reply to Jacquid]

I think the Elaine Moore Graves Disease Foundation website to be the most well rounded and researched website that I came across back in 2015 when pretty much housebound with no answers from the medical profession.

The most recent research I've found is from Korea 2019 and talking about a 4-11 year " window " for treatment with AT drugs as the longer one is on the AT drug the more likely the chance of finding " remission. "

There is a resolution of TRAB within a 2-5 year window for some patients, and suggesting continuous therapy with AT drugs for 5 years reasonable for patients choosing not to go forward with the more drastic action of RAI or a thyroidectomy.

I think the jury is still out in mainstream medical.

Hospitals are under massive financial pressure and to reduce O/P waiting times and RAI the cheapest option, and back in 2004 I knew nothing and told nothing but given leaflets from the BT Foundation that I now know were not fit for purpose.

I feel I was side lined back in 2004 being told at my very first endo appointment that I was to have RAI the following year, and here again when Levothyroxine alone didn't work for me, after RAI, I find myself forced to self medicate if I want to be well and maintain my health, wellbeing and independence.

Now at 74 I just feel disappointed and disillusioned in the whole medical mainstream treatment , or should I say, non treatment, of my Graves Disease.

[Jacquid in reply to pennyannie]

I agree the Elaine Moore site is excellent, and I got a lot of info and support from a thyroid website based in New Zealand back in 2007, not sure it exists anymore but it was so helpful at the time.

I do feel for you about the RAI, I was put under a lot of pressure to have it but I was too scared and had read about the possibility of TED exacerbated by RAI. One of my eyes was very weird during my attack and I didn't want to take the chance. Had my attack happened a bit earlier I might have done it too as there wasn't that much info on thyroid related issues then, or it was hard to find. I am very thankful for the amount of medical papers that are accessible these days, lots of useful information to be had.

Yes I think you're right about the cost aspect of RAI, it's seen as a cure, patients just ejected at the other end once levels in range. I still think of the very elderly lady I met in a thyroid clinic who had quite bad TED and told me how it had come on after the RAI and she couldn't understand why. Maybe she wasn't strong enough for a TT op but the medics had clearly not warned her TED was a possibility. But the B&R was seen as the same re cost, 18 months treatment then I was told to stop the Carb in June, had a few blood tests and discharged. I managed to get the GP to re-refer me because of my symptoms (after reading up on here) but they weren't budging, told me symptoms def not thyroid related as I was within range.

I think my experience has made me disillusioned yes, but also skeptical of the medical professions in that I check everything they say now about any issue and the great thing is we have the information at our fingertips.

[pennyannie in reply to Jacquid]

Yes I had dry gritty eyes at diagnosis, but given RAI and then experienced TED and told my symptoms were not bad enough for corrective surgery and to grow a fringe !

Interesting about the New Zealand reference - I know of one forum member currently go through Graves there but she can't find any active support within the community or country so am guessing your leads now dormant.

There is a said to be NZ thyroid support group but our forum member has left several messages but has never received any reply.

[PurpleNails Administrator]

TSH receptor antibodies (TRAb) Combines the measurement for both - Thyrotropin binding inhibiting immunoglobulins (TBII) & Thyroid Stimulating Immunoglobulin (TSI). both blocking & stimulating antibodies which impact the TSH. (Can others confirm this?)

TBII is not a routine test whereas some hospitals favour TSI testing over TRab for the bio marker for Graves.

Positive TSI or TRab is accepted as evidence of Graves, but there’s an overlap with antibodies. They fluctuate without correlation to the affect of thyroid levels or severity of symptoms and therefore used for diagnosis and rarely monitored thereafter.

Being hyper for any reason, especially if for a prolonged time, causes the TSH to remain low & discordant to the thyroid levels. The technical term being hypothalamus–pituitary–thyroid (HPT) axis down regulation.

I have no autoimmune but having had suppressed TSH and elevated thyroid levels from an untreated toxic nodule many years means my TSH doesn’t go into range even if levels are low for months.

I once asked the specialist about this and they said don’t worry about it you would have to have too low FT4 for the TSH to rise into range. I asked why is this? (I was hoping to get something on my records confirming that TSH is forever more unreliable) & her explanation was “it just doesn’t” & it might rise once I was treated with RAI!

Most feel well with FT4 in top third of range & FT3 in top half so focus on those and not the TSH.

[Jacquid in reply to PurpleNails]

Thanks PurpleNails, that's really useful information about the antibodies, wish my docs were as knowledgeable about thyroid issues as the people on this forum. I don't know what I would have done without it and all of you.

I will focus on the FT4 and FT3 levels and see if it improves my situation, fingers crossed. Altho I see an improvement already I know I will have to wait the 6-8 weeks to be sure.

[Mamapea1 in reply to Jacquid]

Yes, even if medics were half as knowledgeable as forum members it would help! The stories of suffering that I've read on here over the years are a disgrace, yet nothing changes. It's very disheartening. I know exactly where I would be if I hadn't received advice from here, as my body was shutting down through decades of totally inappropriate treatment. I believe I found this forum in the nick of time. We just have to learn all we can, and do whatever it takes to feel well. Glad you're feeling better.