Thyroid UK
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New to hypothyroidism

Help! I've been diagnosed with hypothyroidism at the end of February. I had been feeling ill for months but fobbed off by one particular gp. Eventually, another gp at the practise ordered a full blood count. I have not had a printout of my results as I didn't even know you could do this. I just know she said that my TSH was 120 and my T4 was unreadable? Not sure if I have remembered that correctly. I was out on 50mcg levothyoxin and statins as my cholesterol had gone from 4.7 to 8.7

I was already taking b12 tablets as I was tested 14 months previous and shown to be deficient.

My new reading which was done a week ago shows T4 9.4 and TSH is now 11.

As I said, right now it all sounds double Dutch to me but I am trying my best to understand the impact this is having on me. It's early days and I am very up and down but on the whole better than I was. My hair is still thin but not falling put as it was. My weight is really getting me down as I have gained a stone and a half (I was already classed as obese) and although I have quit smoking 7 months ago and tried to diet, I am unable to shift the weight.

Any help or advise would be much appreciated. My brain is currently frazzled!

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Hello & welcome Celestineuk.

Your levels have lowered since diagnosis, so the Levothyroxine is working. Please can you put the ranges (figures in brackets) when you post blood test results next time.

It is not uncommon for us to be low in B12, amongst other vital minerals such as iron/ferritin, Vit D (& folate & B12) - you should ask for these to be tested too - optimal levels are needed for thyroid hormone to work and take meds first (or last) thing with water away from supplements. It's also quite common for us ex-smokers too!

Have a good read around the forum & also on the main TUK site - for info.

thyroiduk.org/index.html

You should be able to register with your GP practice for on-line access to appointments & blood test results. J :D

(PS high cholesterol is an indicator of thyroid disease)

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High cholesterol may be due to your being hypothyroid. Possibly you don't need statins, they may be more likely to cause muscle pain too

nhs.uk/conditions/statins/c...

So have you had dose increase since this last test?

Standard starter dose is 50mcgs and dose increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range. Bloods retested 6-8 weeks after each dose increase.

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

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

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

Ask GP to test for thyroid antibodies. This is to see if cause of hypothyroidism is due to autoimmune thyroid disease diagnosed by high thyroid antibodies. Also called Hashimoto's

Low vitamin levels are extremely common when hypo, you are already on B12 injections. Have you had folate, ferritin and vitamin D tested?

Low vitamin D is extremely common

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get antibodies tested.

There may be link between stopping smoking, becoming hypothyroid.

verywell.com/does-smoking-c...

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Your original TSH level was impressive (120)! 90% of healthy humans have a TSH of between 0.5 and 1.5, so your target TSH is around 1. It might well take quite a bit more thyroxine to get you down to that level - it's not a linear relationship between TSH and thyroxine dose. Many hypothyroid people find that they have all kinds of symptoms such as brain fog, high cholesterol and hair loss. These should all resolve once your levothyroxine dose is sufficient, and you may even find that your weight starts to decrease because hypothyroidism causes retention of a type of fluid called mucin, which pervades all the tissues in the body.

Well done for stopping smoking, and I hope you begin to find a new, healthier you. If you still don't feel well once your doctor says you are properly medicated (it could take 6 months to a year because each change of dose takes 6-8weeks to build up in your bloodstream) get hold of your latest blood results and post them here (with the lab ranges). Most doctors don't know the difference between 'in range' and 'optimised' when it comes to thyroid medication.

Also bear in mind that most hypothyroidism is caused by antibodies attacking the thyroid. The antibodies don't attack all the time, so sometimes you may feel more or less well medicated, and over the years the thyroid will function less and less well, so you may need an increasing dose of thyroxine to compensate. Most people find that eventually they need a dose of 125-175mcg, although there is a lot of variation.

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Thank you all so much for the wealth of information you have given me.

I have only had one lot of tests done since diagnosis and due for the next lot mid June. I shall ask for a printout of my results and see if they will test the antibodies too.

The gp agreed that my TSH level was extremely high at 120 and indeed I had been suffering for some time but put my symptoms down to menopause. My periods had stopped for almost a year but since being on thyroxine, they have returned (not necessarily ecstatic about that!)

I was experiencing pins and needles and severe carpal tunnel in my left hand/arm and I was referred by the gp to hospital to have some Neuro tests done. This was completed last week and I am awaiting the results.

My voice has become hoarse and my neck appears swollen. Gp has checked and doesn't think I have a goitre but has referred me to ENT as a precaution.

I am extremely anal about taking my pills. I always take them on waking with plenty bottled water... I don't eat or drink for ideally one hour afterwards. This does become awkward sometimes as I work 12 hour shifts so I do 2 days then straight onto 2 night shifts. I have to stop eating around 2 to 3 am for my stomach to empty so I can take levithyroxin at usual time. I do however, experience nausea and have done since starting both levothyroxin and statins.

I take other meds at night before bed. B12 tablets, atorvastatin and cod liver oil supplement. I don't like being on statins but the gp was adamant I started it due to family history (father passed in his 50s with a stroke ad mother also at an early age with heart problems) I am hoping when everything stabilised that I can come off the statins.

Thank you for the advise regarding the blood tests and not taking the tyroxine in the morning on the day of the blood tests. I shall certainly do This.

The gp has increased my dose from 50mcg on diagnosis up to 75mcgs on the 2nd test. Next lot due mid June. They are currently testing me every 8 weeks. My general health is very up and down. It's difficult with my job working long hours in a demanding role (ambulance control) but I am trying to cope. The main problem is the pains I have in my hands and feet. Some days I find it so hard to even get myself out if bed. Other days it's not so bad. Fingers crossed it improves as they alter my dose. In all fairness my Gp has been really good.

Hope this answers all your questions! Thank you so much. There is just so much information about this condition that i am trying to digest!

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Cod liver oil is good but Vitamin D supplements have more efficacy e.g for Carpal tunnel, shin pain etc - from my own experience, what price is pain?

GPs don't normally test Vit D £. But you can get a NHS home test here.... £28

cityassays.org.uk/vitamins....

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Glad at least one GP has brains

Firstly it does take many months of increasing doses to feel better and from herein you should be tested every 4 weeks and dose raised

When correctly treated

TSH should be 1.0 or below

Freet4 should be around 19(10-22)

Freet3 should be around 5 or 5.5 (3.2 -6.8)

Cholesterol should go down to around 5

Start taking at least 2000mg of Vit C in split doses every day

And 200mg of magnesium glycinate or malate 3 times a day

As they help with adrenals and sleep and anxiety and a severe deficiency Hypothyroid causes

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Thank you so much for the advise. I shall go out and get these supplements and hopefully they will help.

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Hi Celestineuk. I certainly know what it's like to be 'fobbed off'. When you know something isn't right in yourself and you have certain symptoms etc... putting on a lot of weight, thinning hair, dry skin, lower back pain, extreme exhaustion etc. Yet I was told "I looked fine". I had to pay for private tests etc, before I was diagnosed with Hashimoto and Thyroid problems.

I started feeling better after going completely gluten free, and taking Levo. I'm also taking B vitamin and D daily. Still not completely myself 'whatever that was' and I guess I've given up a lot of what I used to do after feeling ill and physically exhausted etc.

I just wanted to say... people on this site are so well informed and so helpful. If you post any blood results they will give you their opinions and offer advise etc. A lot better than any GP that I've seen. Wishing you all the best. You've come to the best site xx

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GPs are not currently taught about nutrition or vital minerals - sadly :(

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You guys have been so helpful with your advise. I am hopefully now armed with all things I need to try and start feeling human and living again.

I will be getting the supplements that have been mentioned and will hopefully be changing my eating .. attempting to cut down on gluten, sugar and fat.

Today I have purchased a home yoga DVD and have done a 30 minute flexibility /distress workout. It was certainly big but not very pretty.... however, small steps and hopefully less stress! This I am hoping will help especially with my job. Watch ambulance on bbc1 tonight at 9Pm to catch a glimpse of where I work and what I do.

Yesterday I attended the ENT Clinic and had some tests. They checked my neck and passed a camera up my nose and into my throat to check the vocal chords. The consultant has assured me that all is normal so that's a weight off my shoulders ( I had convinced myself I had other things going on!

I have realised that a lot of how I feel on a daily basis hinges on what I have eaten the day before or during that week. I am now going to be more mindful if what I'm putting into my body.

Once again, thank you for all your valuable advise I shall follow this forum with interest.

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