New member : Hi everyone I was diagnosed with... - Thyroid UK

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Degs58
Degs58

Hi everyone I was diagnosed with hypothyroidism in June, had no symptoms and was put on 25mg levothyroxine, I was ok on that, had another blood test and was told needed to go up to 50mg again I felt ok until about 4 weeks after that but then started having sleeping problems and anxiety , docs reckoned it wasn’t the levo causing it, anyway I’m on 75mg at the moment and have good and bad days, any suggestions on what might help would be welcome thanks

Derek

32 Replies

Derek, you need to ask for copies of your blood test results and post them here. Also can you explain what you mean by good and bad days, what symptoms? Doctors pay too much attention to blood tests, this usually means they fail to diagnose patients but sometimes it's the other way around, they diagnose people who don't have a problem.

Degs58
Degs58 in reply to jimh111

Hi Jim thanks

Yes I’ll ask for them, some days I feel quite normal others I feel a bit spaced out is the only way I can describe it, anxious feeling and don’t sleep well, I had a blackout in June that’s why I was given blood tests which showed I had an underactive thyroid apparently, but was confused when they said my levels where normal but the pituatury gland was making the thyroid work to hard? early days for me I don’t really understand it all as I say no symptoms when I was diagnosed, maybe felt tired a lot and not with it some days but that was it ..I have been diagnosed with depression though about three times in the last 8 years

greygoose
greygoose in reply to Degs58

Depression is a hypo symptom.

jimh111
jimh111 in reply to Degs58

The pituitary secretes TSH which stimulates the thyroid to produce thyroid hormones (thyroxine 'T4' and triiodothyronine 'T3'). T3 and T4 are bound to proteins but a small amount is 'free', it is the free component that is active and measured as fT3 and fT4. As the thyroid hormone levels fall the pituitary pumps out more TSH to make the thyroid work harder. When the thyroid has mild failure TSH is elevated but fT3 and fT4 still within their normal levels. I suspect this is what your blood tests indicate. However, the TSH measurement can occasionally be wrong so it's important to pay attention to your sysmptoms and response to levothyroxine treatment. Post your results when you get them. You could also monitor your pulse to see if it goes high. Another test for too much thyroid activity is to hold your hands out in front of you and look for a fine tremor.

Hypothyroidism can cause depression, hyperthyroidism can also cause depression but not so frequently. It's also possible for your thyroid secretion to be irratic, sometimes too high and sometimes too low. This would show up in a series of blood tests.

Degs58
Degs58 in reply to jimh111

Hi Jim

Thanks for info, still a bit confused with it all , I just know I had no symptoms when diagnosed, all docs seem to want to do is give me beta blockers or anti depressants which I took once but they made me feel 10 times worse I’ll try and get in today to get results

Hidden
Hidden in reply to Degs58

It is confusing isn't it. I've been here for several months now and have learned a tremendous amount, and have a lot more to learn. Don't give up x

What beta blockers are you on? If you are hypothyroid it seems they may interfere with the Levothyroxine, especially if they are taken near each other. Levo needs to be taken at least 2 hours from anything else except a vitamin C tablet, which helps absorption. Don't eat or drink anything - except water.

I think it's the Beta blocker atenolol that is given for HYPERthyroidism, so obviously no good if you are hypo! But you have to come off them slowly if you need to. Ask SlowDragon for advice on that as I'm not 100% certain.

If your thyroxine levels are properly adjusted it is likely that will help improve both high blood pressure and depression.

SlowDragon
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

You are legally entitled to printed copies of your blood test results

Bloods should be retested 6-8 weeks after each dose increase. Likely to need further increases

Dose is increased up slowly in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Low vitamins are extremely common. Ask GP to test these and thyroid antibodies if not been done yet

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)

List of hypothyroid symptoms

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

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

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

Degs58
Degs58 in reply to SlowDragon

Hi

Thanks for info, I will try and get into docs today, I often wake up with my heart racing and feeling anxious, so something isn’t right, docs jus offer me beta blockers or anti depressants

jimh111
jimh111 in reply to Degs58

These are signs of hyperthyroidism which needs to be treated by an endocrinologist.

Degs58
Degs58 in reply to jimh111

Hi

I’ve had some test results and the only ones I can find on there are serum free T4 level 9.5 and serum TSH level 12.61

Doc I spoke to said I was subclinal and she probably wouldn’t have started me on levothyroxine until another test was done, she has put me in for anti body tests,and vitamins

roxanaleah
roxanaleah in reply to Degs58

Will you review those results, please?

The only way I can imagine a doctor interpreting them as "subclinical" is if they are reversed, as in:

TSH: 9.5

Free T4: 12.61

I believe a TSH above 10 is considered overt hypothyroidism by any standards, in any laboratory, in any nation.

Degs58
Degs58 in reply to roxanaleah

Ok I’ll check again not sure which numbers are which but I’ll looknagain

SlowDragon
SlowDragonAdministrator in reply to Degs58

That can be due to still being under medicated, it doesn't always mean over medication

Anxiety is common hypothyroid symptom, as is too much adrenaline. Can cause adrenaline rushes, especially at night

Hidden
Hidden

Just remembered another thing. If you are hypothyroid it is most likely to be Hashimoto's, the autoimmune version. This means your own immune system somehow mistakes the thyroid cells for an "Enemy" and tries to destroy it. Ask them to test for antibodies if they haven't yet. They should have, but... We shall know when you post your blood results.

Thyroid cells that are killed disintegrate and dump their hormones into the bloodstream, sometimes giving temporary hyper symptoms. That may be happening to you, making things even more confusing!

I started on 25 mcg of Levothyroxine too, and am now up to 100. Each time I needed an increase there has been a similar pattern. After a week or so I notice an improvement (sometimes slight, sometimes quite a lot). This lasts a few weeks, then there is a gradual return or increase of hypo symptoms. This means I am ready for another Levo increase. This should stabilise - hopefully I will feel almost 100% soon. Although there will likely be a return of symptoms and another increase needed in the future as the thyroid continues to deteriorate.

Hope this helps :-)

Degs58
Degs58 in reply to Hidden

Oh it says increased TSH suggests suboptimal thyroid replacement

Review dose and compliance with therapy

SlowDragon
SlowDragonAdministrator in reply to Degs58

Do you always take Levo on empty stomach and then nothing apart from water for at least an hour after?

Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Degs58
Degs58 in reply to SlowDragon

Hi yes I take it as soon as I wake up ..usually about 3 or 4 in the morning ..just find it all very confusing ..not sure what do do for the best ..just know I had none of these symptoms when diagnosed

SlowDragon
SlowDragonAdministrator in reply to Degs58

Very common for Levothyroxine to open a can of worms, until we get everything rebalanced

We can have adrenal exhaustion from lack of thyroid hormones before diagnosis. Especially with Hashimoto's, (high thyroid antibodies) as levels hop about so much. Takes a while to settle

Or low vitamin levels can seriously affect ability to use thyroid hormones

Gluten intolerance common underlying issue too with Hashimoto's

Post your results once you get them and members can advise

Which brand of Levothyroxine are you currently on?

Degs58
Degs58 in reply to SlowDragon

Hi yes I’ll try and get them ASAP ..don’t know brand never even crossed my mind I’ll check when I get home

Degs58
Degs58 in reply to Degs58

Hi brand I’m on now is teva 50mg were Mercury 25mg were teva also

Hi

Thanks, I’m having tests for anti bodies and vitamins etc on Wednesday , only because of what I’ve read on here, think they’ve cocked it up from the start tbh..had these results after blood test on the 18th of October had been on 50 mg of levo for four weeks ..hard to interpret for me, definetley says free T4 level 9.5 pmol/L and to the right of that 7.86-14.41 then tsh level 12.61 mu/L and 0.35 -5.50 to the right of that

Hidden
Hidden in reply to Degs58

The numbers to the right (often in brackets) are called the reference range. Anything higher or lower is out of range. So Free T4 9.5 (7.86-14.41) means your thyroid hormone T4 is within range. But it should ideally be higher, nearer the 14.41 official top of range.

TSH 12.61 (0.35 -5.50) means that your TSH is 12.61, which is much too high.

But even a TSH of 5.5 is too high for most hypothyroid people, because whoever invented the ranges based them on healthy people. I still didn't feel well when my TSH was just under 3

Basically, the T4 needs to be near the top of the range and the TSH needs to be near the bottom

The results do show you are hypothyroid and currently under medicated. When on sufficient levothyroxine you would expect your TSH to be below 2.0.

Degs58
Degs58 in reply to jimh111

Ok thanks ..just confused with the symptoms I’m having ..seems more like hyperthyroid symptoms

SlowDragon
SlowDragonAdministrator in reply to Degs58

Often due to low vitamins or Hashimoto's flare

Let's hope GP tested everything as promised

This is a very interesting story Of Derek having an unspecified collapse in June, followed by blood tests showing an elevated TSH but in the absence of thyroid symptoms. He gets put on thyroxine and low and behold he gets symptoms of hyperthyroidism and then drugs to control those symptoms. Its what doctors call treating the blood test rather than the patient.

Here is a useful instructive link - restartmed.com/high-tsh/

This link describes elevated TSH in response to thyroid disease - its a good article. What it does not describe is disruptions to the hypothalamic/ pituitary axis - which could be the cause of the patients elevated TSH and collapse (be they cardiac or cerebral).

Derek needs to change doctors and start again. Someone needs to listen very closely to what exactly happened in this collapse - relevant investigations include a brain scan, ECG and 24 hour cardiac recording.

Here is an article giving a relatively benign cause.

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

I often wake up with my heart racing and feeling anxious, so something isn’t right,

Your heart racing (tachycardia) can be caused by so many things. Just slowing it down without looking for a reason is absolutely typical of the medical industry.

One cause can be eating a diet that is high in carbs and/or sugar. You might have insulin resistance and/or high fasting (early morning) glucose, and might be heading for being diabetic. If you are diabetic or heading that way then you need to know. Ask your doctor for a test of your fasting glucose level and your HbA1c and anything else he/she thinks is appropriate for a diabetes test. Try eating a diet which is lower in carbs and sugar and higher in fat. See this website for more help - they have lots of free resources :

dietdoctor.com/

dietdoctor.com/diabetes

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Another possibility is that your T3 (the active thyroid hormone) is low. Since you have only just started treatment this is a strong possibility. Low T3 can cause some people to have a very slow heart rate (this is the result that doctors expect), others end up with it being very fast. Doctors automatically assume that a fast heart rate is a sign of hyperthyroidism but it isn't always.

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Another cause of fast heart rate is being low in iron and/or ferritin (iron stores), which is very common in people with thyroid disease. Supplementing iron is not a trivial or safe thing to do willy-nilly. You need to know your serum iron, your ferritin, and ideally your transferrin saturation to know if you need it or not - too much iron in the body is poisonous. If your doctor won't test then you have the option of paying for your own test using a finger-prick sample :

medichecks.com/iron-tests/i...

You can get money off the cost with a discount code - read these links :

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

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

If you do that, once you have your results you should post them in a new post and ask for feedback.

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There are probably other nutrient deficiencies that impact on the heart rate - low vitamin B12, low folate, low vitamin D and others. Don't supplement iron, vitamin B12, or folate before being properly tested. Once people start supplementing B12 it can take months to get back to a baseline and that makes it harder to get a diagnosis (if appropriate) from a doctor.

The Canadian Physician Sir William Osler penned the famous aphorism "Listen to your patient, he is telling you the diagnosis," which emphasises the importance of taking a good history. He did not mean it in a literal sense. In 1889, he accepted the position as the first Physician-in-Chief of the new Johns Hopkins Hospital in Baltimore, Maryland - you really don't get more illustrious than this.

Derek needs to consult Sir William Osler - someone who will listen to his compelling story.

I have private messaged Degs58 with my full ID. His story and blood tests do not suggest thyroid disease at all. Its either a very badly let down patient, or an extremely clever Professor of Medicine showing to his students how badly wrong things can go on the internet.

The bigger the dose the more my body reacted - out of control.

In two years and reading up on reactions to over medication which may be the reason for insomnia, high blood pressure, itching, hives, changes in personality just to name a few! I trialed myself, cut prescribed dosage in half gradually and now I own my body again - blood pressure normal - system back to normal. I believe it helped me when I cut down the fillers and I can only tolerate Wochardt Levothyroxine brand.

It certainly is trial & error but you get there! I have NO more swelling of the legs - yuk! My legs are back to normal - slim & pointy ankles!

Hope this helps. P S Wochardt has the least fillers of all brands

Thanks mainly the tiredness now, especially after a night out.

Horrible not feeling “normal” puts you off doing lots of things.

Can you ask the pharmacist for certain brands?

Thanks again Derek

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