Hypo swing or hyper?

Hi,

Hoping for some advice/experience please.

I’m undiagnosed with hyper symptoms but freezing cold and wondering if I could be hypothyroid in middle of a swing? How long do hypo swings last? My episode has been going on since November 2022 but far worse since November 2023.

I don’t think I’m Hashi as antibody tests plus TRab were negative but my TFT is very wrong. My GP has been good with blood tests but the Endo referral in April was unhelpful.

I’m prescribed Propanolol and not thyroid meds.

Thanks in advance, I’m filled my bio.

[pennyannie]

Hello Mandy :

I'm somewhat confused - so with no known positive thyroid antibody readings and an over range T3 - and debilitating symptoms of both hyper and hypo - has a scan been run ?

The Propranolol is a beta blocker and also tends to slow the conversion of T4 into T3 :

Whilst you seem to be without any known thyroid immune system malfunction I just wonder if you wouldn't feel more comfortable taking an Anti Thyroid drug anyway.

All the AT drug does is put you in a ' holding position ' while we wait for your immune system to calm back down again.

Generally the Carbimazole or Propylthiouracil ( PTU ) are prescribed to semi-block one's own new daily thyroid hormone production -

but it can also be used to fully block both your T3 and T4 thyroid hormone production -

and a measured dose of T4 - Levothyroxine is also prescribed so to keep your T3 and T4 results in the range - which hopefully eradicates some if not all of these symptoms being tolerated - and this treatment is called Block & Replace.

What was the endo's plan of action and / or conclusion ?

[Hidden in reply to pennyannie]

Thank you Pennyannie for replying. I had an Ultrasound scan in early January, the results were normal/nothing found. The GP then ran TRab, TPO and TG again, all negative.

I was hoping the Propanalol would reduce the T3 reading but it just keeps rising. The dose keeps getting increased but it isn’t bringing HR/BP down adequately.

I’ve asked for Carbimazole, the GP takes advice from the Endo unit and they have said no. I’m going to ask again today.

The Endo apt was very strange. Straightaway she said she didn’t know what was wrong with me, spent several minutes questioning me about my thyroid meds - I’ve never had any. The next 20 minutes writing down everything I’d eaten that week. Due to trying not to lose weight and feeling hungry all the time I eat a lot more than I usually would. She told me I shouldn’t eat canned tuna because mercury may affect thyroid hormones and she wanted to see me in 8 weeks. I asked why 8 weeks and that’s how long it takes to write her notes up was the reply. I was then sent for bloods. A week later I got the results and a letter from her saying they’ll set a new appointment up. That apt hasn’t arrived and the GP is chasing it.

Thank you for all the info, I will ask about the Block & Replace today.

[pennyannie in reply to Hidden]

Do you have there the very first and / or just this last blood test results/ranges there - and care share what these are ?

Yes, not an appointment that gives you any sense of reassurance.

So all this started around November 2022 and worse November 2023 - what has upset your immune system year on year ?

[Hidden in reply to pennyannie]

Hi Pennyannie, the first test that included all three was in November 2023:

TSH: 0.118. (3.4-5.6)

T4: <2. (7.7-15.1)

T3: 11.6 (4.3-6.8 )- edited range to correct.

The last set were done on the 17th May 2024

TSH: 0.026 (3.4-5.6)

T4; 2.3 (7.7-15.1)

T3: 18.9 (4.3-6.8)

I’m getting them done again tomorrow. I’ve requested the block and replace medication but I doubt I’ll hear from GP until next week.

Thank you.

[pennyannie in reply to Hidden]

  SlowDragon please see above for the blood tests you and I both asked for :

[pennyannie in reply to Hidden]

Any other medications ?

So looking back - do you think this all started back in around 2016/17 ?

You went to the doctor as presumable you weren't feeling quite right - ' but told nothing to worry about ' though now know you had a low TSH back then as well ?

Did the TSH ever recover in these next 5 years and you revert to ' normal for you ' health - and then everything went pear shaped again in November 2022. ?

[Hidden in reply to pennyannie]

I’m on standard HRT, gel and progesterone only, since July 2021.

I’ve lost half of previous reply, symptoms started inNovember 2022 but flared in November 2023. Until then I’ve been pretty lucky with health but I did have three low TSH readings in 2016/17 whilst with a different surgery, current surgery can’t find these results.

[Hidden in reply to pennyannie]

Hi, the low TSH in 2016/2017 was discovered on a routine annual blood test. The only reason I remember is because I was asked about eating goitrogen’s (sp?) and I’d never heard the word before. They did two more tests which were under range ,as I had no symptoms it was deemed ok and nothing further happened. I didn’t chase it or even think about it until I got ill in November 2022. I regret this.

[pennyannie in reply to Hidden]

I'm curious - and can't see why, until the specialists know more, you can't be prescribed Block & Replace - as a stop gap - in order to just try and get on with your life.

When metabolism runs too fast as in hyperthyroid or to slow as in hypothyroid - the body struggles to extract key nutrients through food, no matter how clean and well you eat - so please ask for your core strength vitamins and minerals - ferritin, folate, B12 and vitamin D run as if these aren't maintained at optimal level your health likely compounded further than necessary.

I was diagnosed Graves Disease back in 2004 age 57 and had RAI thyroid ablation the following year - not something I'd recommend to anybody - and now realise I had been Graves/ hypothyroid all my life but never received a diagnosis - as likely my TSH and T3 and T4 levels never presented in the ' right ' way - and no one joined up the dots or looked at physical symptoms and medical history.

I have no answers - thinking on:

[Hidden in reply to pennyannie]

Hi Pennyannie. Thank you so much for helping. I’m sorry you’ve had a hard time, are you in a good place now? I so hope so.

I’m starting to wonder if I ever needed HRT, perhaps what I thought was perimenopause was actually thyroid, tomorrow’s blood test includes estrogen testing. until recently I’d have described myself as a naturally overly energetic workaholic who needed 4 hours of sleep a night. Now I’m wondering if I’ve been ‘overactive’ opposed to energetic.

I’ve heard from the GP after asking for block/replace, they don’t want to prescribe it until after an uptake scan which he says the Endo discussed with me. It wasn’t mentioned on my apt and it isn’t on the letter sent with the results. I don’t know what the test is so I’ll Google!

I’m eating a lot but I will carefully watch vitamin levels. I can’t thank you enough.x

[pennyannie in reply to Hidden]

I'm so much better now thanks in the most part to Elaine Moore - books and website - elaine-moore.com and this forum but am self medicating as the NHS left me very unwell and would not prescribe me any other treatment option but T4 monotherapy.

There seems to be some misunderstanding as to what the endo is meant to be doing - I'd ask for this uptake scan be be marked as urgent as a next day - appointment - if there is such a thing - but do not agree to anything else - as I think I remember this was the next step towards RAI thyroid ablation.

There is a lot of confusion and overlap of symptoms with stress and anxiety triggering many ' female issues ' at puberty, child birth and menopause - everyone's normal is unique to them - and we take for granted how we are until something stops us in our tracks - as we can't keep pushing through - and it's then that one's health comes to the fore - and it can be a Pandora's box.

Maybe you didn't need HRT - maybe you did - who knew - and what symptoms did you have then - and were they resolved - or did more evolve - and maybe you have been running much faster than what is considered normal - but you saw it as your normal -

Just as an aside - some of those already on thyroid hormone replacement find that taking HRT messes up their thyroid hormone replacement and they need a dose increase in thyroid hormone replacement.

Thinking on :

[Hidden in reply to pennyannie]

Morning Pennyannie, it’s great that you feel well now, appalling that you have to self medicate but well done in finding your solution.

Thank you so much for all the help and ideas yesterday, that site is brilliant, thank you for posting it. I found pages of posts from people with the same TFT readings and symptoms as me! I’ve spent the last 15 hours reading Elaine Moore’s articles, blogs and forum, ordered supplements, books and now have a treatment plan going forward. I’m going to run it by my GP who has been supportive so far and start on Monday when stuff arrives.

I’m not keen on the uptake scan now, I plan to avoid it if I can.

Thank you so much. Hope you have a wonderful weekend. X

[pennyannie in reply to Hidden]

Yes - I found this comment strange as from what I've read on here - AT drugs and Propranolol seem now to be prescribed as a stop gap - rightly or wrongly - for many patients - while they wait for a hospital appointment and the necessary antibody blood tests as the system is so backed up.

Yes I thought you might find the Elaine Moore website and open forum interesting - Elaine is now a leading authority on Graves and thyroid AI disease and there is a facility to contact her on a one to one basis - which is where I ended up some years ago - and if around she does reply - just be aware she is in the States :

Onwards and upwards -

[pennyannie in reply to pennyannie]

P.S. Good morning !!

[pennyannie in reply to Hidden]

Are you aware of a swelling or lump in your neck visually or when swallowing ?

Maybe they were thinking ' goitre ' back then - do you remember how your health was back then and why you were going to the doctor ?

How are your eyes - dry, gritty, light sensitive, streaming with tears, one more painful than the other ?

Are you taking any supplements containing iodine ?

No point regretting - lets try and find a way forward.

[Hidden in reply to pennyannie]

Hi, it was a routine blood test, I don’t think I was ill at all. I’ve never had a lump/goitre or any anything unusual when swallowing. I don’t remember it being deemed as serious or needing anything done. No iodine, i do eat eggs and fish but not excessively.

I can’t say for definite as I can’t remember the 2016/17 appointments but I think it was assumed that was my normal as everything else was good.

I will keep pressing for the block/replace, thank you for suggesting this.

[SlowDragon Administrator in reply to Hidden]

They are extremely odd results because Ft4 is so LOW

normally when hyperthyroid both Ft4 and Ft3 are very high

No wonder endo is cautious

You will need to wait to see endocrinologist

Meanwhile get vitamin levels, cortisol and cholesterol levels tested

[Hidden in reply to SlowDragon]

Morning SlowDragon, thank you so much for all the help yesterday. I’ve ordered the supplements you often list and will test privately to ensure levels are the best I can get them. I’ll have to wait for the Endo apt but I’m not in a rush now as I got a plan from Elaine-Moore.com and am hoping my GP will support it.

Have a great weekend.x

[SlowDragon Administrator]

Have you had an ultrasound scan of thyroid for possible “hot” thyroid nodule

mayoclinic.org/diseases-con...

PurpleNails may pop along with more information

[Hidden in reply to SlowDragon]

Hi SlowDragon, thank you for replying. Yes had the ultrasound in January, it was clear.

[SlowDragon Administrator in reply to Hidden]

A week later I got the results

Can you add these actual results and ranges

Ask GP to test vitamin D, folate, ferritin B12 and cortisol if not been tested yet

[Hidden in reply to SlowDragon]

The results from the Endo apt on 19th April 2024:

TSH: 0.064. (0.34-5.6).

T4: 3.3. (7.7-15.1)

T3: 19.6. (4.3-6.8 )

I’ve made an error in previous T3 range in brackets, it’s 4.3 - I’ve typed 3.4. I’ll try and edit/correct it. Sorry.

GP are testing vitstomorrow, they are usually high in range, I’ve tested with Medichecks as GP doesn’t usually test them. Cortisol hasn’t been tested, I’ll look into it.

Thank you so much.

[Hidden]

pennyannie SlowDragon

How are you both?

Thank you for all your help. I had the Uptake Test and a vitamin test. Graves has been diagnosed due to too much iodine /Tec99) being absorbed in my thyroid. The medication at 320mg Propanolol daily is to remain.

You were both right about vitamin levels being impossible to maintain with hyperthyroidism. Mine have halved in 6 months even though I eat four times the amount of food recommended for my age/height. I’m now heavily supplementing including B12 injections daily.

I’ve booked a TFT with antibodies, TRab and vitamin panel in 3 weeks time to see if the supplements are working. I’ve no faith left in the NHS Endo, she thinks this has happened because I ate two cans of tuna a week. I find this difficult to believe, as do my two GP’s, optician and dentist.

My bloods this week are:

TSH: 0.008. (0.34-5.6).

T4: 3.3. (7.7-15.1)

T3: 22.6. (4.3-6.8 )

I’ve stopped eating tuna, just in case the Endo’s right!

Thank you so much for all the help and hope you’re both well.

Mandy.x

[pennyannie in reply to Hidden]

Hey there again ;

So Graves has been diagnosed from a scan and without a blood test ?

I don't know what Graves looks like on a scan - - so has this led to a prescription of an Anti Thyroid drug - and your request for Block & Replace treatment considered ?

Until your metabolism slows down I doubt you'll see the benefit of the supplements and blood tests tend to run a couple of weeks behind symptoms anyway.

Is this test you have arranged private or NHS - as the Graves antibody blood test is a separate blood test and around £100 privately -

The NHS are not obliged to accept private blood tests and often - do not -

surely, by now, the NHS must have run the Graves antibody blood test through the appropriate NHS channels ?

[Hidden in reply to pennyannie]

Good Morning pennyannie

My GP ran Trab twice in February, both came back negative. The TPO and TG were negative too. The ultrasound scan in January was also showing a healthy thyroid. I asked about block and replace and the Endo said she’d have to talk to her team (possibly called MDT?) as she doesn’t know enough about that process. This statement is worrying me, I haven’t found anything online that describes her as an Endo yet the letters come from the endocrinology department.

The iodine/Tec99 scan, measures how much of the injected substance is absorbed by the thyroid. In Graves a lot would be absorbed, mine absorbed it so that’s what the diagnosis is based on - I think. Hopefully along with symptoms but they are often brushed past.

I’ve ordered the tests privately as the Endo isn’t interested in vitamins. I don’t think I’ll be seeing her after the next appointment on the 19th of July. I am considering self sourcing AT and monitoring bloods privately and through my GP where possible. I will only do this if my GP agrees to monitoring.

I’m trying not to be overly negative about my experience with the local endocrinology department as I appreciate there must be good ones out there.

I’d really hoped that supplementing vitamins would get me back to good levels, I’m trying to slow everything down and relax but I need constantly reminding to ease up. I don’t notice doing 100mph. I will email the Endo and GP now and request AT block and replace.

I don’t know if I trust the GD diagnosis but I need medication to slow down.

Thank you again for taking time to reply.

Mandy.x