Has my thyroid gone haywire?: My thyroid has... - Thyroid UK

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Has my thyroid gone haywire?

Suffolklady profile image

My thyroid has been unstable for quite a while now but I had a test 6 weeks ago and the results were within ‘normal’.

TSH 0.86. (0.27 -4.2)

T4. 21.7. (12.0 -22.00)

I’ve not been well for several months. I blamed it on changing from hydrocortisone from predisolone for an Adrenal test. At the end of January I wasn’t feeling well, all of a sudden I couldn’t walk, I was unstable, I had the shakes I couldn’t think straight. I went to the doctors and had a ECG as my pulse was through the roof. I was put on beta blocker. I got worse through February had a terrible dry mouth, my legs were so weak I couldn’t get up stairs. At the beginning of March I tried to think was it adrenal insufficiency or perhaps my thyroid? I asked for a thyroid test but had to wait 5 weeks as NHS do then every two months.

I’m was on levothyroxine. I had a terrible few months of tiredness, dry skin, itching and pricking that was getting me down shaking and I had this intense thirst and dryness in my mouth. I wanted to get a full thyroid test so I asked the doctor if I could have a full thyroid with T3 he said it wasn’t necessary but he would write it on the blood form. Apparently there’s no space for T3 and unless there’s a problem with the thyroid reading they don’t do it. It’s all computerised and a machine decides. I had my bloods done on 20th March. The next day the doctor rang and said my T4 was beyond the scale of testing >100. I’m now off levothyroxine and on Propylthiouracil. It’s been over a week and I’m feeling a lot better.

Jan19th TSH 0.86 (0.27-4.20) miu /L. T4 21.7 (12.00-22.0) pmol/L

March 20th TSH 0.05 (0.27-4.20) miu/L T4 >100 (12.00-22.00) pmol/L T3 34.5 (3.10-6.80) pmol/L

Ferritin 386 17-60 13-50 no /ml

Has anyone got any thoughts on the last results? Has anyone had such a dramatic change in their test?

29 Replies

Hopefully the PTU is working now but I would have regular blood tests to check your levels. Your results before taking PTU were very high and hopefully they are a lot better now. I have a multi-nodular goitre and Graves' disease. Last year after I attended a friends wedding I had a thyroid storm and was admitted to hospital because my heart rate was too high and I was sweating and shaking I actually collapsed after walking into A & E. I think my goitre had dumped too much thyroxine in my blood stream. Your symptoms before treatment sound a lot like mine were. Luckily I recovered but it was a scary experience. Also your Ferritin is high ... mine is as well because I have inflammation in my body.

My reading were surprisingly high and my Doctor has sent a letter to my endocrinologist. Like you I was in such a state in the last six weeks or so. I had an incident where I had sickness and diarrhoea to the extreme that I was unable to take my medication of any kind and I was severely dehydrated. I had to be admitted to hospital and was in there for three days. I still had severe shaking and my legs wouldn’t work plus other things. I have also got inflammation in my body it was the measured CRP at 27 or ESR can’t remember which one but the other was 4. Like you it was a scary time but when I came out it had not improved even with my regular medication. I think from that point on I realise that it was nothing to do with my other health problems. Yes my ferritin is high it’s never been as high as that in fact it’s usually about 65 which is on the low side.

I think my CRP was 9 but it has dropped now ... do you have a goitre?

No I don’t have a goitre. However since all this business my throat has felt like there’s something there when I swallow. It’s very tender and sore near the bottom of my neck but it might be coincidental.

It sounds like your thyroid is inflamed and swollen. I didn't realise I had a goitre until the GP pointed it out. I just look like I have a fat neck which goes with my fat face! Hopefully the PTU will rest your thyroid and you will be able to wean yourself off it. I would just make sure you have regular blood tests because PTU is a powerful drug.

Here is a link about it

bnf.nice.org.uk/drug/propyl...

To tell you the truth I can’t feel anything but when I press in that area it feels uncomfortable. My neck is ‘fattish’ due to taking predisolone so there might be one there but I can’t see the doctor with all this distancing going on. My throat was so sore and I was having trouble with catarrh nasal pain and ears so i rang the doctor and he’s given me an antibiotic. I hope it makes my sinus more comfortable. Thank you.

Perhaps after all this coronavirus is over you could ask for a thyroid ultrasound to see if you have any nodules. I have a multi-nodular goitre but you really can't tell I have one. I expected mine to get bigger but it hasn't yet and I have had it for about 12 years now.

I have been referred to ENT for an ear problem also saw anther GP on a different occasion with throat discomfort catarrh and sinus issues she’s done a different referral to check my throat with a camera. Maybe that will come up with something. Unfortunately everything is uncertain at the moment. My neck externally always feels clammy to the touch and developed multiple skin tags probably nothing what’s so ever to do with anything. I can’t feel anything in my throat goitre wise.

I can't feel anything if I touch my neck but if I tip my neck backwards I can see a slight swelling. Also I choke on my food sometimes and I have coughing fits in the middle of the night so I keep a class of water on my bedside. I once choked on a pea and my son had to pat me on the back! which was quite embarrassing. Hopefully your tests will show something up and I would ask the doctor who does the test if they think you might have a goitre because it was a GP who actually spotted mine.

Things don’t go down my throat as easy as they did a few months back. It’s more difficult to swallow larger things it uncomfortable.

I had trouble swallowing some large antibiotic tablets in January and at one point one of the the tablets got stuck so I had to stick my finger in my throat to dislodge it .... very scary!

That sounds scary. I found that little tablets were getting stuck in my lower throat I’m sure eventually they dissolved but it felt that they were there still there. Everytime I swallowed I felt there was something there all the time.

I have that sensation so I always drink plenty of water with my food and if I need to used paracetamol I use the dissolvable kind so I can swallow it easily.

SlowDragon profile image
SlowDragonAdministrator

Steroids affect thyroid hormones and TSH

theinvisiblehypothyroidism....

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

Some of your symptoms suggest low vitamin levels, especially low B12

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

When back on levothyroxine.....Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Did your doctor not immediately do a retest? Those results just don't look right. I would suspect laboratory error, interference with the tests, something like that. Do you take biotin? Have they tested antibodies? Those results look high even for Grave's.

No my GP did not do a re-check. Why would I need one done? Can you explain why you think the results are not right. No I do not take biotin I don’t know what that is? This was an NHS thyroid test as I said on my post I asked for T3. I suppose I was lucky to get that tested as it isn’t always necessary if the readings are correct so I was told. It is a computerised system that only chooses T3 to be test in certain circumstances.

I would think a recheck should be done because it is just not normal or logical for results to suddenly leap up like that on the same dose. And, the FT4/3 are rediculously high - they would be so even if you had Grave's, but as you were being treated for hypothyroidism, they just do not make sense. And, they are definitely too high to be Hashi's. And, if you were hypo to begin with, the thyroid just cannot suddenly regenerate itself to start making such rediculously high levels of thyroid hormone. It just doesn't happen. However, laboratory errors, assay interference, do happen.

Plus, I think, if your FT4/3 levels really were that high, you'd be very, very ill.

Just because you were told that the FT3 isn't necessary doesn't mean it's true. They don't want to test the FT3 for various reasons of their own - one, of course, being penny-pinching! But, it really should be done every time.

I was very very ill getting worse by the day but the doctor didn’t know what may be causing it. I have lots of medical problems it’s difficult to establish what come from where. But believe me I WAS extremely ill bedridden then very sick and finally hospitalised.

My thyroid has never been stable it’s up and down with each test. I’m not saying that this reading was gospel but I’m just a patient in a system. I don’t know enough to contradict the medical professionaI will find out in time though when I speak to the consultant

The medical profession don't know enough to contradict anybody, either. And, I don't suppose your consultant will have a clue! But, even if you had Grave's, your thyroid couldn't make that much hormone. I'm pretty certain about that.

Does your doctor usually dose by the TSH? If so, that's why your thyroid has never been stable. Dosing by the TSH is wrong. It will never stabilise you - although stability is not really what you're looking for, what you're looking for is optimal levels, and you won't find those dosing by the TSH, either.

But, if your FT3 were really that high, you'd probably have had a heart attack, by now.

SlowDragon profile image
SlowDragonAdministrator

Excessive sweating at night linked to low B12

bmj.com/content/349/bmj.g52...

As far as I know my B12 has always been in your range I have checked back on previous blood tests and it’s never changed. I’m not saying this could not happen.

SlowDragon profile image
SlowDragonAdministrator in reply to Suffolklady

When on levothyroxine we need very good levels of B12

Typically at least over 500.

Normal range is typically anywhere within 180-680

Frequently symptoms of B12 deficiency develop if B12 less than 500

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms

It’s also possible to appear to have high B12 but actually have functional B12 deficiency if other B vitamins are very low (eg folate or thiamine)

nutris.viapath.co.uk/pages/...

Low thiamine linked to thyroid problems

Strongly recommend getting FULL thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

I have only ever been on a very small amount of levothyroxine 25mg. I don’t think it was enough to do any good. I was on the borderline of hypo so had 25mg to start but everytime I tried more I felt ill. With all the symptoms I had plus how ill I felt like death door I’m not surprised it was off the scale. The doctor was shocked as well however a few days on the corrective drug I felt so much better and it continues. I don’t know what all these antibodies mean and I’m don’t like to sound to up myself when talking to a professional it was hard enough asking for T3 test. I see my Endocrinologist in May although I think the way things are going it will be a phone call. He might enlighten me. By that time I will be due another thyroid test. This 2 month business is so annoying. The links sometimes don’t always explain in layman terms. It’s far better sometimes listening to explanation with this group. So I thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Suffolklady

There are two sorts of autoimmune thyroid disease

Graves’ disease (hyperthyroid) where antibodies attack causing over stimulation of thyroid. Diagnosed by high TSI or Trab antibodies. Can also have mildly raised TPO orTG antibodies

Hashimoto’s (hypothyroid) diagnosed by high TPO and/or high TG antibodies. Hashimoto’s can very frequently start with transient hyperthyroid results and symptoms as thyroid cells are attacked and physically breakdown releasing large levels of thyroid hormones

Very, very important to all ALL thyroid antibodies tested

thyroiduk.org.uk/tuk/about_...

Ask endocrinologist to do so and for thyroid ultrasound too

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

Very low vitamin D, folate and B12 linked to BOTH Graves and Hashimoto’s

Low ferritin linked to Hashimoto’s

High cholesterol linked to Hashimoto’s

Link about Hashimoto’s

thyroiduk.org.uk/tuk/about_...

Link about Graves’ disease

thyroiduk.org.uk/tuk/about_...

Strictly gluten free diet helps with both Hashimoto’s and Graves’ disease

First step is to get full thyroid and vitamin testing

I have hydrohydrisis in both my hands and feet. I do not sweat excessively otherwise. My hydrohydrisis is much better being on predisolone for some reason, only on 6mg.

SlowDragon profile image
SlowDragonAdministrator in reply to Suffolklady

I agree absolutely with greygoose you4 latest results are extremely suspicious...if they really were that high you would likely be in hospital extremely unwell

Suggest you request thyroid retest including Thyroid antibodies for Graves and Hashimoto’s and all vitamins and cholesterol test

Well the doctor was concerned but said not to worry. It was only when I requested a copy I saw it. He’s written yo the endocrinologist so obviously he must have been concerned.

have you tried home remedy on it like coconut oil and apple cider vinegar and ginger it will be a very good help to you

Suffolklady profile image
Suffolklady in reply to hooyes

No I haven’t. Can you tell me a little more please?

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