Please help me understand my life is already st... - Thyroid UK

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Please help me understand my life is already stressed!!

Debs1960 profile image
15 Replies

Hi just wondered if anyone can tell me if I need the test repeating as this is what I've been told I take 50 levothyroxine been nearly a year since my last test and I've been feeling unwell which to be fair could be down to stress (my husband whos only 62 has been diagnosed with Alzheimer's after overcoming prostate cancer which is in remission) but I need to be well I could understand repeating the rest if it was a routine test and I felt ok but I don't any help would be great thanks xx

FREE T4 AND TSH

Serum free T4 level 14.0 pmol/L [10.0 - 20.0]

Serum TSH level 12.3 mu/L [0.5 - 4.4]

Above high reference limit

Results suggest subclinical hypothyroidism. If

on thyroid hormone replacement, results suggest

inadequate dose or poor adherence to agreed

therapy.

Please note new reference range for TSH, FT3 and

FT4 as of 05/12/17.

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Debs1960
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shaws profile image
shawsAdministrator

I am assuming your test results above were the initital ones? Or are they the latest?

Debs1960 profile image
Debs1960 in reply to shaws

I've just had these done based on this result it's come back as retest I went to see my GP who said its a year since I'd been tested and my symptoms fitted.

shaws profile image
shawsAdministrator in reply to Debs1960

After your initital diagnosis your GP should have given you 50mcg of levothyroxine, with a blood test every six weeks thereafter until your TSH was 1 or below. Free T4 and free T3 should be in the upper part of the range.

Any blood tests for your thyroid hormones has always to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards. Levothyroxine should always be taken, usually first thing when we get up with one full glass of water and wait an hour before eating. Or, if it suits you better, at bedtime as long as stomach is empty usually about 3 hours after a meal. You miss night dose if having a test next a.m. and take after test and night dose as usual.

A blood test has to be every six weeks until your TSH is 1 or lower. Some (many) GPs and endocrinologists think if it is somewhere in the range (i.e. yours is up to 4 and they'd be happy but insist on a TSH of around 1). Your FT4 level should be higher but they haven't taken Free T3 which is the more active hormone. T4 is inactive and has to convert to T3. T3 is the only Active Thyroid hormone needed in our millions of T3 receptor cells to enable our metabolism and especially heart/brain to function well.

Doctor has to test B12, Vit D, iron, ferritin and folate - everything has to be optimal.

p.s. I am very sorry your husband has been diagnosed with Alzeimers. I have read that 'good fats' can be helpful and keep in mind I am not medically qualified in anything at all. There may be no harm in going onto the Alzeimers site for advice. Usually a very low B12 can cause deterioration in brain. link below.

alzheimers.org.uk/get-suppo...

Debs1960 profile image
Debs1960 in reply to shaws

Thank you I'll up my dose and wait for the gp surgery to officially tell me I only got this information because I can access my test results and thank you so much for the link I've already been on the forum lots of information there think it's still sinking in he was only diagnosed in May xx

shaws profile image
shawsAdministrator in reply to Debs1960

It's early days if only diagnosed in May but at least you can recover more quickly now.

Debs1960 profile image
Debs1960 in reply to shaws

It was my husband who was diagnosed in May I've had problems for years I'm one of those who always got fobbed off!! xx

shaws profile image
shawsAdministrator in reply to Debs1960

I'm sorry you are one of the lost sheep. Wondering about why you've got all these awful symptoms.

Once upon a time when doctors doctored we were diagnosed upon our clinical symptoms alone and give increases of NDT until our symptoms resolved. No blood tests then and were probably far better off as there was no internet access then. People didn't appear to die either as they were given all of the hormones a healthy gland would have produced i.e. T4,T3, T2, T1 and calcitonin made from pigs' thyroid glands so was conducive to the human body.

i.e. NDT means natural dessicated thyroid hormones.

Debs1960 profile image
Debs1960 in reply to shaws

It is absolutely ridiculous what we have to go through my mum has it my aunty (mum's sister) my cousin my daughter's came back borderline and they won't do anything even with the family history they have already said she will probably end up with underactive but they have to follow NICE guidelines if only they would treat her symptoms it just gets me so angry like we are not important my husband can't work now so I need to be ok!! xx

Aurealis profile image
Aurealis

So sorry to hear about your husbands diagnosis. You need to increase your dose of Levothyroxine by 25mcg and if that doesn’t resolve your symptoms, by another 25mcg until you’re symptoms disappear. You may find that your symptoms initially resolve following an increase in dose and then return, this indicates that you need to go higher. It’s very difficult to cope with any stress while not adequately treated so it is a priority to increase dose now not wait for a repeated test. If you don’t have 25mcg tablets you could cut 50mcg in half. Best wishes

Debs1960 profile image
Debs1960 in reply to Aurealis

That's what I'm going to do still waiting to officially be told results which have been there and looked at by a GP since Wed I'm obviously not important!! 😩

Judithdalston profile image
Judithdalston

You need your levothyroxin raising. If this is the result of being on thyroid 'meds' for 12 months your doctor has been negligent...he/she should have put you on 50 mcg levo for 6 weeks, then retested and raised it 25 mcg for another 6 weeks..etc.. Your TSH is much much too high...perhaps it's shocked the doctor, thus the need to retest, you ideally should have a TSH of 1 or under. Ever been tested for the two autoimmune antibodies (TPO or TgAb) and Hashimoto's disease? It is possible you have Hashimoto's ( if not probable, as the vast majority of hypothyroid sufferers are)- antibodies periodically attack the thyroid gland mistakenly believing it to be 'alien', resulting in dead cells, plus their hormones, being dumped into the blood stream. This produces fluctuating thyroid blood tests...the dumping of lots of hormone called flares causes peaks of Free T4 and T3, and low TSH, then afterwards comparative troughs with raised TSH, low frees. Doctors often don't understand what is happening and diagnose hyper- rather than hypothyroidism. Eventually so much of the thyroid is destroyed you become permanently hypothyroid. Another characteristic of Hashimoto's is poor gut absorption due to low stomach acid- this means nutrients from food, drink and even supplements are low. Worth getting VitD, B12, folate and ferritin tested, and if neceassry supplement to optimum levels ( not just within ranges as might be ok to your doctor), in upper half of ranges. See SeasideSusie's replies to previous posts on good supplementing practice, doses, brands etc. You could try a gluten free diet, even dairy free, to reduce the antibodies and lessen the severity of their attacks. If you doctor is reluctant to test beyond your TSH, and they don't look like they would judging from treatment to date, then many of us use private labs like Medichecks and Blue Horizon. Good luck.

Debs1960 profile image
Debs1960 in reply to Judithdalston

Think I'm going to get them all done privately then at least I will know just the thought of trying to get any ammont of blood out of my finger? x

Debs1960 profile image
Debs1960

I do have Hashimoto's disease my antibodies were high I also was originally diagnosed with hyperthyroidism and spent a year on carminazol (think that's how you spell it) I'm also menopausal have osteopenia and osteoarthritis but I need to be well to look after my husband so I don't want to be fobbed of with retest and having to wait I'll start myself on 75mg thank you so much for your reply!! xx

Debs1960 profile image
Debs1960

*update no phone call so I rang them adive was satisfactory and to retest in six months!! I'm dumbfounded I've insisted a Dr phone me so first it was Tues then later today after I insisted need to have ammunition for the call any advice welcome!! xx

Aurealis profile image
Aurealis in reply to Debs1960

Maybe mention ‘dumbfounded’ ‘training’ ‘competence’ ‘compassion’ ‘caring’ ‘feeling unwell’ ‘treatment’ ‘anger’ ‘harm’ ‘negligence’ ‘complaint’

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