Log in
Thyroid UK
91,816 members β€’ 106,079 posts

Newly misdiagnosed?

Picked up sick note and also copies of my last 3 blood tests.

On 7/6:

TSH 4.85 mU/L (0.3-4.2)

Only other oddity was my RBC was very slightly over range 4.96x10x12/L (3.8-4.8) - but everything else was okay (and I'm quite familiar with interpreting FBC because of B12 absorption problems). No ferritin but other iron related measures all looked okay.

will research that though suspect it's not significant enough to really be an issue.

(and B12 was over range - surprise, surprise!)

on 20/9

TSH 5.96 mU/L (0.3-4.2)

free T4 11.2pmol/L (9.0-19)

Free T3 3.4 pmol/L (2.6-5.7)

on 12/10

Thyroid peroxidase antibody level 366 iU/mL (<60)

Now I wasn't symptomatic aside from having been a bit tired/run down in June which had prompted the trip to the doctors and that wasn't really an issue for the second 2 tests.

I have understood the standards that I've been reading in the last few days means that I'm subclinical and the normal protocol would have been to monitor rather than jump into treating me - which would mean developing symptoms or TSH rising above 10 ... or T4 getting out of range.

I also seem to be being treated as if I was over 65 - by starting me on 25mcg rather than starting me on a higher dose that would be around the level I'd be expected to need which seems to be the protocol for those under 65 - and I have a decade to go before I get to 65. Added to this is the fact that I have B12 absorption problems - probably PA though not formally diagnosed - which means its likely that I'd need higher levels of levo anyway.

I've been signed off for a week because the levo has just completely knocked out my energy levels - didn't do anything on Friday but managed a few things over the weekend but I am so slow and so tired now. I keep doing odd brainfog things but realise I've done them rather quickly.

I'm really not sure where to go with this - can't afford to be losing a week every 6 weeks if GP is going to insist on raising levels by 25mcg each time. Not happy about ending up highly symptomatic.

I'd been supplementing with some kelp which really helped with the tiredness after the June tests - or more accurately supplementing with a little bit more kelp - my GP seems to think this 'can't do any harm' - obviously not seen any of the numerous studies that have identified excess iodine intake as a factor in AIT ... though have to admit I was aware of it before I decided to supplement but with low stomach acidity and a few months of really bad migraine that meant losing a considerable amount of bile wasn't sure if iodine was a factor or not. Not really got much faith in the GP right now.

Note: most likely cause of raised RBC is dehydration as test was a day after a migraine with severe nausea

24 Replies
oldest β€’ newest

Your results would be sub-clinical if your abs were not also raised. However, you have clear evidence of Hashimoto's Disease. Usual advice - I think from Prof Toft, but hopefully someone can correct me - is to start on T4 because your thyroid gland is subject to autoimmune attack and will eventually fail.

25mcg is a starting dose and is just enough to knock out your own production of TH; if you stay on this, or raise very slowly, you will feel more tired than you did before treatment.

4 likes
Reply

from what I was reading over the weekend - the progression of AIT is very slow and the postition is far from clear as to whether to treat or not - the documents linked from the TUK suggest that it is appropriate to treat where THS is above 10 but not where it is below, assuming that I have read things correctly.

Reply

That's the NICE guidance. I'm surprised TUK seem to be endorsing that, because leaving treatment until TSH reaches 10 forms the central criticism of current hypothyroidism treatment protocol in the UK. Elsewhere, treatment for 'simple' primary hypo-T starts around TSH 2.5-5.0.

In real life, most people suffering severe hypo-T will see decades pass before their TSH rises that high. It's one of the reasons - there are others - why the measure is usually ignored on this forum. It can be useful in consideration with FT4 & FT3 results to suggest central hypo-T resulting from pituitary or hypothalamus under-activity, but I can't think of any other circumstances.

5 likes
Reply

Hi, the normal protocol is to start treatment if sub-clinical, having had 2 raised tests 3 months apart to rule out transitory hypo- if there are positive anti-bodies. In fact you are lucky to receive treatment as many have to fight for it regardless of the protocol. It is not unusual to be started on 25mcg at any age, however, especially at levels between 5 & 10.

Your positive anti-bodies means you have the auto-immune form or Hashimotos, as do 90% of us hypos. Your immune system is mistakenly attacking the thyroid, killing off cells and gradually eroding its capability to produce the hormone every part of your body needs. There is a strong association between this and underlying food intolerances causing gut damage and leaking of inappropriate particles into the blood, triggering the immune system. The most common among these intolerances is gluten, followed by dairy and soy. It is usually recommended that we try at least a 3 month trial of a strict gluten free diet.

This gut damage also typically causes serious nutrient deficiencies that must be corrected with high quality, single supplements before the body can effectively use any thyroid hormone, our own or in tablet form. The most important among these are vit d, folate, ferritin and vit b12 (obviously you are addressing this one,). Do you have test results for the rest of these?

Correcting thyroid can be a slow process as the dose should only be raised by a maximum of 25 mcg every 6 weeks to avoid shocking the body. The ultimate aim is to arrive at Tsh around 1 or below with ft4 and ft3 both high in range, or whatever is required for relief of symptoms.

The other main thing is that tablets should always be taken on an empty stomach at least 1 hr before or 2-3 hrs after food, tea or coffee, well away from other meds or supplements (at least 2 hrs, usually 4). All tests should be done early morning - ideally before 9am - having fasted overnight and 24-36 hrs after last Levo dose.

As to your question about reaction problems, some people are very sensitive and have to raise dose very slowly, others are sensitive to the fillers used in some brands. Teva has caused particular problems recently. But you can expect some issues as your body adapts to having more hormone.

Gillian

5 likes
Reply

Gambit62,

There's no misdiagnosis. You have positive antibodies which means you have autoimmune thyroiditis (Hashimoto's) which causes 90% of hypothyroidism. Treatment may be delayed until TSH is 10 when patients are asymptomatic but progression to hypothyroidism is going to happen and symptoms will develop. Feeling tired and run down are typical hypothyroid symptoms.

NICE recommends:

For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.

cks.nice.org.uk/hypothyroid...

I think your GP's starting dose has been appropriate for your age and TSH level.

I advise stopping the Kelp which is high in iodine. Iodine used to be used to treat hyperthyroid patients and is known to reduce thyroid levels and raise TSH.

It can take 7-10 days to absorb the Levothyroxine before it starts working. It's not uncommon to feel worse for a couple of weeks after starting Levothyroxine due to hypothyroid symptoms worsening, but after 2-3 weeks improvement should be felt. It will usually take up to 6 weeks to feel the full impact of the dose.

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

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

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

7 likes
Reply

thanks Clutter - however, I don't have heart disease nor severe hypothyroidism so still feel as if the treatment isn't appropriate. I had such a bad reaction last week - and I'd stopped taking the kelp the day before the levo was started anyway. I switched to taking it in the evening as I was finding myself waking up, taking it and then sinking into unfathomable exhaustion about 1/2 hour after taking the dose - take it on an empty stomach, and make sure it is well away from my last food/coffee and any supplements of any sort.

do people react to every change in levels the same way they react to starting ?because if I've got to go through this every few weeks for the next x months whilst dose is built up from such a low level ...

whilst I was tired in June I wasn't tired in September, until I was put on levo and now I'm just completely knocked out energy wise - mood is less of a problem since switching to evening but I think that probably concerns me more than the fatigue.

was never checked for temp or reflexes.

Reply

Gambit62,

25mcg is appropriate initiation for TSH 5.69 whether you are 25 or 65.

Some people do have initial adverse reactions to Levothyroxine but it doesn't necessarily follow they will have difficulty adjusting to dose increases.

NHS diagnoses on thyroid blood results, not reflexes and temperature, or even symptoms.

Which make of Levothyroxine are you taking?

3 likes
Reply

thanks Clutter,

really crap the way symptoms don't get a look in.

thanks for the potential reassurance on changes in dose.

amazed by actually how poorly thyroid function really seems to be understood when I read through medical literature - particularly in relation to interaction with iodine.

1 like
Reply

Clutter asked the question about brand because some have recently been complaining about a brand.When starting on a low dose the body notices the increase in hormone you are taking and produces less so this may be the cause of feeling worse.

2 likes
Reply

The NHS is meant to take signs & symptoms into consideration. Sadly they rarely do. This is more to do with fear of the GMC rather than good practise due to a number of doctors being struck off or 'Managed' because they didnt stick to the rigid blood test ranges.

On top of which very liitle training is given to doctors on hypothyroidism despite it being very prevalent in a GP surgery. So doctors are not trained to spot the signs & symptoms. Old school doctors managed people very effectively on signs & symptoms as blood tests didnt exist until the 70s. Sadly those old school doctors have retired now so we have lost their expertise & are left with the excessive reliance on the blood test which does not give the whole picture. Even worse more and more doctors treat by the TSH (rather than thyroid hormone levels) which has been shown to lead to under treatment.

4 likes
Reply

Oh and btw I had migraines for years until diagnosed hypothyroid. Since I have been at close to and then optimum levels, I haven't' that'd a migraine at all. So whilst I have no proof they are linked, anecdotally from my own experience they would appear to be.

1 like
Reply

my migraines are definitely hormonal - but given that my mother and grandmother both had similar but stopped after the menopause I don't think thyroid is the cause, though I did ask GP if it could be a factor in them getting worsebut he just pooh-poohed the idea.

Reply

And of course GPs are expert on migraines aren't they! Did you realise there is still no medical explanation for what causes migraines? Whilst they may be worsened by the hormonal cycle - which btw is impacted by thyroid in that adrenals are tied in to ovaries and thyroid - if they were caused by that, then why do they not start when periods first start? I didn't have any for instance until my mid 20s, funny enough about the same time I can identify thyroid symptoms looking back. Could your mother and grandmother also have been hypo- there is very definitely a genetic element?

You can always deny the hypo and put off treatment, but your positive anti-bodies show that it is only going to get worse. Untreated hypo is linked to so many conditions including heart disease that why would you wait till you have complications before accepting you need treatments? Try taking an anti-histamine an hour before your Levo tablet. If that reduces your reaction then try a different brand.

2 likes
Reply

neither mother nor grandmother were hypo - no history of hypo in the family - well not in my blood line anyway. Mother Mody diabetic - but came from her father's side of family and my brother got that particular gene.

well aware that nobody really sure what causes migraines. Mine happened at changes in hormone levels and they may well have started when I started ovulating - though I didn't consciously note them until my 20s.

I don't doubt that having antibodies would mean it would happen one day.

Reply

My own classical migraine with aura (black holes in vision & flashing zig zagging patterns but no headache) was usually set off over the years by very bright light, nowadays, some energy saving lightbulbs, hormonal changes, or accidentally eating chocolate, cheese and tomatoes all on the same day!

Son, when training to be a diving instructor, came across diving research linking migraine with aura to a pfo - minute hole in the heart (I was diagnosed with leaky heart valve in childhood). Years later, after misdiagnosed and untreated hypothyroidism, a scan showed two leaky heart valves. Much later, a further scan showed only one leaky valve! I can only speculate that adequate thyroid and B12 medication may have healed the second one?

theguardian.com/society/200...

I rarely get migraine with aura these days after self injecting with Hydroxocobalamin.

PS. Granddaughter also has a pfo and migraine with aura.

3 likes
Reply

Last year, my husband had such severe headaches, sometimes bad enough to wake him, that he had urgent investigations for a brain tumour. We undertook thyroid testing ourselves, because our GPs also pooh-poohed the idea of low thyroid being the cause. However, severe headache and migraine-type visual disturbances had also preceded my own eventual hypo diagnosis, so I knew this was worth investigating. Husband's results were sub-clinical, abs within range, but cautious self-treatment with desiccated thyroid eradicated the headaches.

3 likes
Reply

You really need to avoid multivitamins and any supplements that have iodine or kelp in. It can make Hashimoto's much worse

thyroidpharmacist.com/artic...

This link is particularly helpful as to why it's a bad idea

drknews.com/iodine-and-hash...

But changing to gluten free diet is likely to reduce symptoms

5 likes
Reply

I have stopped and as per post I am aware that excess iodine intake has been linked to AIT.

2 likes
Reply

Hi Gambit62,

A lot of Pharmacists are dispensing a new brand of Thyroid Replacement meds by the name 'Teva'.

Lots of patients/ members have had very bad reactions when they were changed to Teva, and have requested to get their usual brand.

Teva is a cheaper medication and that is why the NHS are using it. It has a filler that a lot of other Thyroid meds haven't got.

J πŸ€

3 likes
Reply

Clutter and Jose651 - brand appears to be wockhardt - other ingredients: lactose, sucrose (fine powder), maize starch, magnesium stearate

not the healthiest list of other ingredients :)

really not clear if I don't also have a virus going on - have had a cough since I started taking the meds - along with intermittent sore throat - no runny nose - or not that I could differentiate from reaction to ivy pollen at this point in the year.

Just going through the afternoon low point

1 like
Reply

Gambit62,

Wockhardt has fewer fillers than Mercury Pharma and Teva which also do 25mcg tablets.

Easiest way to check whether you are having an allergic reaction to Wockhardt 25mcg is to take an antihistamine tablet an hour before or even stop taking the Levothyroxine for a couple of days and see whether symptoms improve.

1 like
Reply

scared I'd stop entirely if I tried going without for a few days and things improved :)

- will try the anti-histamine tonight.

1 like
Reply

Happy Days. I know it's difficult Gambit, but this too shall pass.

I was quite stable for over 20 years on levothyroxine, until I hit menopause around 48 years of age.

It is very possible that you have PA, like myself, although not diagnosed either, but we know the treatment is the same as for B12 def.

Autoimmune diseases run in packs, as the saying goes.

I'm sorry that you have hashimotos.

You are in the right place here with great knowledgeable members and the Admins aren't the worst either. πŸ˜‚πŸ€

6 likes
Reply

When I was diagnosed with Hypothyroidism 15years ago, 50mcg was the starter dose. 25mcg was only used for the elderly or people with heart problems or very poor health. In the instruction sheet that came with the meds it said this!

When did 25mcg become the 'standard ' starter dose?

My TSH was 4.8 with upper range being 4.5. The key factor was that my thyroid hormones were consistently gradually declining & had dropped below the ranges. Its why we recommend getting copies of all results & keeping them as if they demonstrate a gradual decline then this can be evidence to start treatment even if the TSH is under 10. Ive not checked the NICE guidelines but it certainly used to say that!!

The specialist I saw actually explained to me that too low a starter dose of levothyroxine can actually make you feel worse. This is because it lowers the TSH & so your thyroid stops producing what little thyroid hormones it was producing -however the replacement dose of T4 isn't sufficiently high enough to counterbalance this affect. This might be what is happening to you.

As you have B12 problems have you been checked for Coeliacs? You are correct that it could potentially affect your uptake of thyroid hormone treatment.

An expectation of having to get a TSH of over 10 before starting treatment is one that has come into play in the last few years and has caused much grief & ill health. It has resulted in many hypothyroid patients resorting to self treatment in order to get well. On a personal note by the time my TSH had reached 4.8 I had the classic facial features of hypothyroidism -my photos tell a shocking story. Unfortunately many doctors are not trained in the signs of hypothyroidism & rely solely on blood tests so my obviois physical signs were missed unti a specialist saw me. Doctors should be checking for signs, symptoms and blood tests -many dont amd short cut it to a blood test and often that blood test is TSH only! There is tendancy to then give such a person a mistaken diagnosis of CFS/ME when really they are Hypothyroid.

Definately avoid the iodine! Ensure your iron, folate, vit D & B12 levels are all maximised.

Am sure you have already but if not read up madly on your condition. Knowledge is power and am sure like the B12 world a knowledgeable patient is a wise one! Thyroid UK have a list of good books. Dr Peatfields Living with your Thyroid is a good core one.

Lastly Hasimosis can mean that you may ultimately fare better when either T3 is added in or you take a Natural Dessicated Thyroid extract or T3 on its own. However you are at the start of your journey and it could well be that with a decent amount of levothyroxine being slowly incrementedly increased you feel heaps better. Increases are usually done on 6-8 weeks basis as your body takes time to respond to the hormone treatment. To fast or quick increases can cause you to end up being over treated and getting hypER symptoms instead.

As a final note -be aware of the fillers in your tablets. For some people they can make a difference to uptake of their medication. This is why some people prefer certain brands. I certainly was one of those people and addressing that factor made a massive difference to my uptake and sense of wellness. Whether you are one of those people or not only time will tell as there isnt as far as I know any specific medical test to check this.

Hope you start to feel better soon....

5 likes
Reply

You may also like...