I am really needing some help: I last wrote a... - Thyroid UK

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I am really needing some help

csavery8753 profile image

I last wrote a post complaining about my endo back in the summer, I had i come off ndt after 13years ash she said she thought i might have ME.

Concentrated on my no glute, grain, dairy, sugar, wheat and for a little bit a felt much better. i struggled over christmas and come new years day I had a stoke.

can anyone tell me why my t3 is 5.5 even though Im supposed to have hashis and I have negative antibodies.

All my cholsestrols are high, which have shot up since november when I dint feel this bad.

Has anyone else on here received treatment and where on symtoms alone?

Id be thanfull for the help and advise.

Thank you

54 Replies
SlowDragon profile image
SlowDragonAdministrator

If you tested positive for high thyroid antibodies in past, even if now within range….you still have autoimmune thyroid disease

Have you had BOTH TPO and TG antibodies tested

NHS only tests TG antibodies if TPO antibodies are over range

Significant minority of Hashimoto’s patients only have high TG antibodies…..

Please add most recent TSH, Ft4 and Ft3

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

What vitamin supplements are you currently taking

Important to test vitamin D, folate, ferritin and B12 at least once a year

HiI'm used to Dr Skinner then Barry Petefiled my levels dint really come into it as I was so sympomatic. Then found the endo who took over Dr Skinner, been with her for 6 years.

Now she give to me, I have nowhere to turn.

I also caught covid whilst in hospital, absolutley no symptoms what so ever, would this have an effect.

My lipids have also come back high, would this be affecting anything?

Hi csavery8753

“HiI'm used to Dr Skinner then Barry Petefiled my levels dint really come into it as I was so sympomatic. Then found the endo who took over Dr Skinner, been with her for 6 years.”

Think this is a classic case of presuming the replacement will follow on in their predecessors foot steps and being sorely let down. Take on board the advice of fellow sufferers- lots if good advice here.

Wish you well. But do get genned up yourself read and get to know your own condition. Take it at your own pace but persevere- new subjects take time to bed in and read on this forum regularly to help build a picture. I did this - learnt - fought my corner - got on full replacement dose of T4 which is currently working for me. See profile for detail. Remember we are all different. We are let down by the medical profession as a whole. You need to be your own health advocate.

Good luck

can anyone tell me why my t3 is 5.5 even though Im supposed to have hashis and I have negative antibodies.

Why would you think that your T3 can't be 5.5 when you have Hashi's? Levels tend to jump around with Hashi's, as the dying cells leak hormone into the blood. Having an FT3 of 5.5 (what's the range by the way?) doesn't mean you can have Hashi's.

Antibodies, too, fluctuate. But, once you've had an over-range results, it means you have Hashi's, and that doesn't go away. So, pretty sure your doctor was wrong to take you off NDT because she thought you had ME. Maybe you have Hashi's and ME. But, the Hashi's is eventually going to completely destroy your thyroid, and you're going to need that NDT again at some point. ME or no ME.

And if your cholesterol level is rising, your FT3 is probably dropping too low. And, it will be the low T3 making you feel bad, not the high cholesterol. Cholesterol doesn't cause symptoms at any level.

I only say 5.5 is high because this is what Im told. My tsh 1.6

free t4 14.3

tpo 1.7

they didnt do the other

Im starting to come with hives. cant walk, puffy face, drooping eyelids , I really do need some help can anyone recommend who I can see.

SlowDragon profile image
SlowDragonAdministrator in reply to csavery8753

Can you add the ranges (figures in brackets after each result)

Eg

Ft4 14 (12-22)

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine

Do you take levothyroxine waking or at bedtime

Alway on empty stomach and then nothing apart from water for at least 1 hour after

No supplements or other medications within 2 hours

Iron, magnesium and vitamin D at least 4 hours away from levothyroxine

What vitamin supplements are you currently taking

Recommend getting FULL thyroid and vitamin testing privately

High cholesterol levels suggests under medicated for thyroid

Hi Thank you

My issue is that I havnt taken anything since August, m banging my head up brick wall with my nhs gp.

I had a telephone call with Anneleyze Myer she told me with the levels she would consider treating me. Raised concern about the cholestrol and the

SlowDragon profile image
SlowDragonAdministrator in reply to csavery8753

You mean you haven’t taken any replacement thyroid hormones of any kind since August

You definitely need FULL Thyroid and vitamin testing done

Via GP, hospital or private blood test

Those thyroid tests were taken on the 6th January. What else shall i do? Shall I waste my money on the dutch test ?

sorry I sent it before I left

and she didnt say the cholestrol was high due to untreated hypothyroidsm and mentioned the my gloucose was high.

Knew Id been on ndt for years told me if it was making me feel worse, then I maybe I shouldnt of been on it.

Batty1 profile image
Batty1 in reply to csavery8753

In order for people to give you advice about your thyroid stuff you need to add the ranges for whatever thyroid test you did receive.

csavery8753 profile image
csavery8753 in reply to Batty1

Thank Batty1I will do, I'm trying to get a print out of the the text and ranges for the gp. None of my tests are showing on the NHS app0

I don't know if your FT3 is high, because you haven't given the range. But, that's irrelevant. You have Hashi's, and levels can jump around. And, you're probably feeling so bad because you aren't taking any thyroid hormone anymore. You need to start it again.

thank you very much for your help tonight, i will source some

Well, I'd rather see the ranges for those blood tests before saying you need to take thyroid hormone replacement of any kind. It's just a hunch that you do, and you should never have stopped it. But, I don't know why the endo told you to stop it - apart from the fact that she 'thinks' you have ME - which is probably rubbish.

Thinking back, I think I should of checked out my adrenals, I was wacked out. I much better with my food now and I will check vitamin status, I will learn every I can about t hashis. Can you reccommend any books? I was offered statins in hospital which I flately refused. I will send you my bloods when I get them.

SlowDragon profile image
SlowDragonAdministrator in reply to csavery8753

nhs.uk/conditions/statins/c...If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Request vitamin D, folate, ferritin and B12 tested by GP or endocrinologist

Or test privately

Come back with new post once you get results

okey dokey will do nite nite :).

Books about Hashi's? No, I'm afraid I can't. But, here's a brief rundown I wrote myself:

OK, so Hashi's is an autoimmune disease – commonly called by doctors Autoimmune Thyroiditis - where the immune system attacks and slowly destroys the thyroid. It is diagnosed by blood testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.

(It's necessary to understand that the blood test to see if your hypothyroidism is autoimmune might not give you any further information, for three reasons:

* What they are testing for are TPO antibodies. Antibodies fluctuate all the time, so one test might be negative, and the next positive. But, if you have one over-range test, it does mean you have Autoimmune Thyroiditis.

* There are two types of Hashi's antibodies: TPOab and TgAB. The NHS only tests TPOab, and they might be negative, but if your TgAB are positive, it means you have Hashi's anyway.

* Some Hashi's people never even have over-range antibodies. They are diagnosed by ultrasound. So, a negative antibodies blood test does not mean you don't really have it.)

There are two types of Autoimmune Thyroiditis: Ord's and Hashimoto's. But, we call them all Hashi's for convenience. The difference is, that with Hashi's, you have a goitre, with Ord's you don't. But, the end result is the same: a dead thyroid.

Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:

"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.

The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."

After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.

There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.

(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)

Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.

There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!

However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.

But, there are things the patient can try for him/herself to help them feel a bit better:

a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.

b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.

c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the theory is, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.

Oh My, that Has described exactly me for over 10 years. Thank you again for tonight, thank god for this site !

You're very welcome. :)

Alanna012 profile image
Alanna012 in reply to greygoose

However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.

Don't want to derail, but does this account for the strange temporary feeling of wellness you get when you initially stop taking meds like levothyroxine? It can last for several weeks or a few months before you end up crashing spectacularly, but during that brief reprieve you almost feel 'cured'

It has happened to me several times, I even lose weight. Then of course I almost end up in hospital from the crash into severe hypo.

greygoose profile image
greygoose in reply to Alanna012

No, it doesn't. That's a separate phenomena that happens even when people don't have Hashi's. :)

Hi Alannas102

Yes that is exactly whats happened. And of course Im usually bad enough in the winter months while taking NDT but of course at the moment Im not taking anything,

I wasnt perfect but would settle for compared to how I feel now :(

Me1157 profile image
Me1157 in reply to greygoose

You guys should write a book - 'Is it all in my head or is it my thyroid', Written by paitients for paitients!

greygoose profile image
greygoose in reply to Me1157

Sounds like a good idea, but... :)

Me1157 profile image
Me1157 in reply to greygoose

No buts, amazon is a great placed to publish without it costing much. Print on demand and or kindle is free ( I've been told). Take some of the topics off here and start arranging them - change names or don't bother with names at all. Questions and answers about thyroid

greygoose profile image
greygoose in reply to Me1157

Frankly, who has the energy to do that? Not me, I'm afraid.

Me1157 profile image
Me1157 in reply to greygoose

You have sooo much knowledge and you help so many. Thank you for all you do

greygoose profile image
greygoose in reply to Me1157

You're welcome. :)

please excuse the punctuation Ive barley the energy to write

Don't worry about it, I am the same when ill. Don't even recognise my own writing.

Apart from any thyroid issues that you may have, the supposed diagnosis of ME should be addressed as a matter of urgency. The symptoms of ME can mimic other conditions, which should be ruled out in order to be able to best alleviate any symptoms being experienced. This endo sounds very negligent in the handling of this matter, maybe, dare I say it, because you need investigation by a different specialist. It is your health at stake here, so list your symptoms and how they affect your life, and start afresh. Do remember, too, that not everything is thyroid/endo related.

Thank Partner 20

My father has struggled for past 35 years, he never went down the thyroid route, that scares my alot. All those years ago and things havnt changed. Im so hypothyroid that I can barely walk and the brain fog in on another level. my son thinks Ive a IQ of a 3year old at the moment! The only thing that is giving me hope as that I have been this bad a couple of times before in 13 years.

Wow! Hard to believe, that someone else had a stroke on New Years day too. Hope you are recovering and not feeling too exhausted. Mine was caused by blocked carotid artery and have had operation to remove blockage. Not too happy about all the meds I'm on but been assured, I need to take them.

csavery8753 profile image
csavery8753 in reply to sobs1962

Hi sobs1962

I'm sorry to hear that you have had a stroke, and too are recovering from your op. I wish you well ;)

sobs1962 profile image
sobs1962 in reply to csavery8753

Thanks for that, will be a long, slow road, I suspect

T3 being at 5.5 means nothing to me. Please provide the units and normal range. Also, FT3 is generally regarded as being more useful; was your T3 test actually total T3? High cholesterol is a well-known symptom of hypothyroid; see hypothyroidmom.com's list of 300+ symptoms. Also, ME (Chronic Fatigue) is the very first symptom of hypothyroid mentioned in hypothyroidmom's list. Did this doctor object to NDT because she thought your TSH was too low?

csavery8753 profile image
csavery8753 in reply to Eddie83

Hi Eddie83I Will order the tests from Medichecks and Post them when I have them. I have a plathora of the 300 symptoms, Its just persuading the NHS to diagnose me or at least listen to me.

# i struggled over christmas and come new years day I had a stoke.#

6 month ago her trouble started

Her thyroid Tablets had been taken away from her.

She collapsed and was in hospital, may got covid while in there then a stroke.

Csavery, you need to get your results printed out and tell us the ranges of the test results. (Eg. T3 5.5 ( 2.8-6.8))

And what tests you have done and when, also what vitamins you take and how much.

Something is terrible wrong here.

You also need an ultrasound to find out what is left of your thyroid.

It is very early here in Australia and I need a coffee,

As I see it, WE should give pointers , pointers you can write down and present slowly to your endo and or the GP.

As I see it, you are very down and feeling not well

Of the 33 answers in here half of them are chitchat and not helping you. (Sad)

I might have gotten something wrong here or missed reading

But……..

BtW, wasn’t there a case in here ..years back..we’re a patient was Tilt by the doctor: I can see in your bloodtest results, your results are fine now. You don’t need to take your thyroid medication any longer!

We were in shock to read about that!!

And now you , you had a stroke…….

csavery8753 profile image
csavery8753 in reply to Christa2

Thank you Christa2

I am going to order the Medichecks full thyroid panel, then I can post them on here. can you please tell me what Thryoid Ultrasound I need, I will need to go private.

Christa2 profile image
Christa2 in reply to csavery8753

Hi csavery, As you probable know, having hashimoto, is bad for the thyroid. Slowly it will destroy the thyroid. With a small thyroid there is no health. It will never repair itself. You need to be medicated.

With an ultrasound, the doctor should be able to see that you need to be on thyroid medication.

If you were on prescription thyroid meds for 14 years and now since September without it….your stroke (in my opinion) is the fault of your health carer, GP and Endo.

#If I was you, I read all my post.

#Take notes.

#Report the privat bloodtest in here. (Don’t forget the ranges.) you should be able to get your latest bloodtest printed out by the receptionist, it is your right to have the paper in your hand with the same info printed on it as the doctor has!

#have a file, were all your bloodtest-reports be holt in one place.

I wish you Good luck, better health

tattybogle profile image
tattybogle in reply to Christa2

At the moment , with the information we have , It is not at all certain that csavery has hashimoto's .There is no evidence of raised thyroid antibodies, and has not been in the past (as far as we know )

There are not now and have not been in the past any thyroid blood tests that support a diagnosis of hypothyroidism (as far as we know )

TSH/ fT3 /and fT4 still appear fundamentally OK even after 4 months of no thyroid hormone being taken.

She was originally treated on the basis of symptoms alone.

However she stopped taking NDT for 3 months around January 2021 , due to it 'affecting her brain' and then again in August 2021 because she was having problems that NDT wasn't helping despite trying 3 different brands of NDT .

So what is going on is not very clear.

Christa2 profile image
Christa2 in reply to tattybogle

Thank you tatty. That is partly what I thought.

Hi csavery. I have read through your previous posts .

There's no information about your original hypothyroid diagnosis from years ago , except that the NHS don't acknowledge you are hypothyroid, and you were a patient of Dr Skinner. then Dr Peatfield , and then the Endo who took over Skinners patients.

Aug 2019 ~ you had increased to 1.5 grains NP Thyroid (NDT) but had a numb hand and foot , and fatigue , and you were asking about re-starting adrenal supplements . no further information.

Dec 2019 ~ asking the same thing, no results.

Jan 19th 2021 ~ TSH 0.19 (0.35 - 4.94)

letter from Endo "it appears you are overtreated on NP thyroid but symptoms are not improving…..maybe its time to try either a different preparation or add some T3 and reduce the dose of the NP Thyroid or try Armour."

You also said you had stopped NP Thyroid because you were getting brain symptoms

"Until I can speak to my endo, I've had to stop taking my NP Thryoid as it seems to be effecting my brain. When I first started the NP a couple of years ago, I had to break the tablet up into 1/4s throughout the day, so this didn't happen".

Jan 30th 2021 ~ TSH 1.53 (0.35 -4.94) FT3 4.4 (2.6 - 5.7)

"I havnt taken any medication of any kind for just over 4 weeks now. Not because I dont want to, I just havnt been able to speak to my NHS gp to get the bloods requested from private endo.

Needless to say I am literally bed bound now"

March 2021 ~ " I have started 1 grain of armour in the morning after not taking anything for over 3 months. Its made me feel more fatigued,"

your last post in May 2021 ~ said the endo has stopped supporting you , but you didn't reply to any questions so we don't know why she did this , or what your blood test were on Armour . or how you felt on it.

August 2021 stopped taking any NDT

New year . Stroke

Jan 6th thyroid bloods .( presumably from hospital as an inpatient ? )

fT3 5.5 [? -? ] could be either mid range or high, but it certainly isn't low.

TSH 1.6 .... Mmm .... to say you've had no NDT since August, this looks pretty normal

fT4 14.3 [? -? ] this is definitely within range, but we don't know 'where' within the range. could be quite low or quite high.

tpo 1.7 negative , no history of thyroid antibodies as far as we know .

I think if people on here are to be able to help you properly , we need more information about what has happened . On the little information we've got so far it's hard to make head nor tail of what's going on.

If you could provide a bit more detail about what happened when you tried Armour, and why the endo stopped supporting you , and give us any other blood test results you have , it might help us to help you .

Hi tattbogle

Thank you for your reply, apologies for taking so long to reply.*

I looked back on Dr skinners notes back, from my my blood test he said that my thyroid swung, and that he was doing a treatment that kill my thyorid off. starting low and raising it really high. Of course, that didnt happen because he sadly passed away. My gp interfered even though I was doing really well, down the gym, running, back to myself.

did he word 'swung' mean hasitmotos?

Then went to see Mr Peatfield, he told me to treat my adrenals first then introduced me to NDT that worked. when i saw him I could hardly walk and a mother of all hypothoroid symptoms.

Do you think that its a given that I should take these everyday, for my NDT to work effectively, I ask this as no one has mentioned my adrenals in these posts.

Maybe thats why they wont working, I didnt feel right.

I've had Functional Health test at beginning of December they attached,0

Armour didnt work, when back on Np then changed to different brand

At some point researched that I may have B12 problems and started to regularly inject.

In amongst all this, have been gluten, mainly daily free since the summer,

I have stopped taken the vit d because my levels went up to 249.69=0 nmol\L. ill text again now.

My Endo I saw just did a quick telephone call to see how my symptoms were, which now are no where near how I am now.

I am going to get the finger prick test from Medichecks, is there a text for the adrenals or shall i just supplement with them?

I will post them as soon as ive got them.

If you look at the glucose on the results. does this mean I have a problem with that?

Thank You

Sorry i forgot to attach my functional blood test results

blood sugar regulation 100% the blood indicates some conditions associate with blood sugar dysregulation like hypoglycemia (periods of low blood sugar)metabolic symdrome hyperinsulinemia and diabetes.

i'm sorry i don't know anything about adrenal issues, or testing So i wouldn't dare comment on if you should be taking the adrenavive again or not.I'm hoping Hidden or ' radd might know more , so i'll tag them. (history is summarised in my post above this one, for anyone who can help )

It sounds like you stopped taking NDT in august because you didn't feel well on it , and your recent thyroid bloods don't indicate an obvious thyroid problem , or cause , so perhaps you are right to wonder about the using the adrenavive again if you used it before when NDT did seem to help you .

I think it will be difficult/impossible to get an endocrinologist to agree to treat you for hypothyroidism with those thyroid results.

Moog77 profile image
Moog77 in reply to csavery8753

What treatment were you on when you felt well with Dr Skinner?

csavery8753 profile image
csavery8753 in reply to Moog77

Hello Moog77

levo but changed as my joints became very painful. My walking and balance is very poor atm, and my face is very pale and bloated. the black ring under my eyes. And back then too I never had brain fog like this.

Moog77 profile image
Moog77 in reply to csavery8753

Perhaps a return to levo with T3 might be your answer with careful monitoring?

csavery8753 profile image
csavery8753 in reply to Moog77

yes Id try anything.

I would be interested to know whether I should supplement with adrenavive first, go back To what Dr Peatfield told me to and if so should I be on them forever?

I had i come off ndt after 13years ash she said she thought i might have ME

I can't actually see how these things are related. People with ME can be hypothyroid or have other thyroid disease. People with ME could have pituitary or hypothalamus problems too. They aren't mutually exclusive. ME doesn't prevent people from having any of these problems.

The other problem I have with the MEdiagnosis is that it is a diagnosis of exclusion. So other things have to be excluded before a doctor decides that a patient has ME. But I must admit, from the reading I've done I suspect a lot of doctors diagnose ME when they find a patient they don't want to deal with, and it helps them to get rid of a difficult patient.

And I also don't follow the logic of coming off NDT if you had ME. Was your doctor suggesting that you would be better off on some other thyroid hormone replacement, say Levo, T3, or Levo + T3?

Hello Humanbean

A quick telephone appt with the endo going on that i could have ME was just her clutching at straws because things werent working for me. Again, was this because of the adrenals, Am I meant to supplement with them all time?

She does seem flaky each time, got the feeling she was winging it. All I know up until last year I have felt relatively well, with a few ups and downs which is whats to be expected.

hopefully the diet, the selenium. B12 , adrenals , other supplements and thyroid meds all at the same time will work.

I will go away and do all the tests and send them over to all you knowledge people to see.

thank you

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