Help!: Hi guys...new to here...was advised to... - Thyroid UK

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kirsty1946 profile image
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Hi guys...new to here...was advised to join. Recently diagnosed hypothyroid (after years of being convinced I had it but told bloods were normal) started on 50mcg levothyroxine. Past wk symptoms getting worse! Psoriasis gone to pot... swollen hands...swollen ankles...sore stiff joints..infection up my nose..headaches total struggle to get out of bed....truly fed up! Only ever had my TSH and FT4 tested.

July results:-

TSH 0.96 (0.5 - 6)

FT4 12.6 (9-24)

Told I was totally normal

November results

TSH 10.7

FT4 12.1

diagnosed hypothyroid started on levothyroxine.

Where do I go from here?! Advised I need antibodies tested and FT3. Anyone else in same situ?

Xx

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kirsty1946
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Spareribs profile image
Spareribs

Hi Kirsty & welcome

strangely enough I was looking at these earlier for my low Vit D (cheaper than a sunny holiday)

androv-medical.com/section/...

I've also been prescribed Levothyroxine last week - did you have an explanation/doc advice?

May I ask who advised you to join us? just curious, antibody tests e.g. TPO confirm if your diagnosis is the usual autoimmune variety but treatment is the same.

We also tend to malabsorb nutrients & minerals so suggest getting tests for iron- ferrritin, folate & B12, vit D at least, if supplementing already these should be well away from Levo which should be taken first thing (or before bed) with water only. J :D

kirsty1946 profile image
kirsty1946 in reply to Spareribs

Hi J

It was Lorraine Cleaver who advised me to join. No explanation just oh yes you were right in the end you are hypothyroid after all!! Grrr!! My ferritin was low apparently but I dont know the actual level. Cholesterol a lovely 8.8 i think it was! Docs on 5th jan blood getting redone but gotta feeling I will have a fight re proper tests altho doc is the one who looked after my dying mother who died of endocrine cancer!! Surely she will listen?!

Xx

Spareribs profile image
Spareribs in reply to kirsty1946

The lovely Lorraine, I met her with Dr McKendrick signing his book 'the Great Cholesterol con' at the TUK conference - cholesterol is an indication your thyroid needs treating.

Yes, strange how we know we are hypo before docs do - we notice our own signs & symptoms.

I am sorry about your mum but you may have to remind your doc about it, I haven't mentioned losing my mum last year to the GP - I'll get the depression quiz all over again.

Our symptoms can get worse to start for several reasons:

☼ Thyroid hormone needs sufficient nutrients/minerals to work (esp iron).

☼ The pituitary monitors hormone increases and stops what you were already producing accordingly - so it's stalemate until you take enough hormone replacement - why is it 'for life & free prescriptions' on NHS?

☼ A vet doses per weight -100mcg = 7 stone - I'd need at least double for full replacement.

☼ GPs are afraid to overdose thinking we should just be 'within range' when actually folk feel better below TSH 1. There are articles from Dr Toft, Skinner, Lowe to support this.

best wishes, Jane :D x

kirsty1946 profile image
kirsty1946 in reply to Spareribs

Thank you for all the replies...just getting round to checking them...my 2 rugrats keepin me busy today! My cholesterol has been high for a number of years and have also paid privately to have cholesterol spots removed from my eyes. I am also moderate to severely deaf at 41 years of age and paid privately for hearing aids. Didnt realise till now this could all have been related to my thyroid. My little boy is just 8 months old and have also wondered if symptoms have been triggered having him as I remember some of the same symptoms after having my daughter who is almost 4. All ive ever been told till now is I have depression which makes me tired and I need to watch my diet! I am determined now they wont palm me off with crap!! Thanks for all your advice. I will request all the bloods you have stated and ask for an endo referral also. I will post my results and ranges once I get them. Sorry for the massive rant....nice to talk to people who dont think ur just a fat lazy scabby cow lol!!

Xxx

Spareribs profile image
Spareribs in reply to kirsty1946

:D

Clutter profile image
Clutter

Welcome to the forum, Kirsty.

Take your Levothyroxine with a full glass of water on an empty stomach one hour before or two hours after food and drink, two hours away from other medication and supplements and four hours away from vitamin D3, calcium, iron and oestrogen.

Don't take your Levothyroxine until after your blood draw as peak levels in your blood can skew the results and may dissuade your GP from increasing your dose.

Most GPs and labs won't test FT3 unless TSH is suppressed <0.04. High TSH usually equates to low FT4 and FT3. As TSH decreases FT4 and FT3 should improve.

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

Ask your GP to test thyroid peroxidase and thyroglobulin antibodies to rule out or confirm autoimmune thyroid disease (Hashimoto's). Gluten-free diet can be helpful in reducing antibodies if you have them.

Ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.

Diva_4 profile image
Diva_4

Hi just wanted to say hello & that I'm in a similar boat.

Diagnosed within last 6 months, started on 25mg now on 75mg levo. I've had times when I want to throw the tablets in the bin as I've felt worse than ever. I saw an endo but it was pointless really, I was in there less than 5 mins and he had no time for me at all. Ive got two little ones & currently dragging myself through each day.

This site is amazing and given me confidence to be more direct with the gp's as they tell you bare minimum! We just have to keep pushing I think! Hope you feel better soon. X

kirsty1946 profile image
kirsty1946 in reply to Diva_4

Yeah we def need to keep pushing! Im stressing a bit at mo as my partner leaves work work in about a wk and wont be back till April. Thought of feeling like this on my own with an 9 month old and 4 year old isnt good! Sure I will find it jn me to cope but thought scares me...be so much easier if I felt halfway bloody human!! See what monday brings at gp xx

Welcome Kirsty,

Perhaps the blood tests on the 5th are to see if you need an increase in the Levo yet? Sounds as if you do! 50mcg is a low dose, but the doc is right not to whack you onto a big dose straight off. That would make you feel ill too. The rule with dose changes for thyroid meds is only small changes and give it time to take effect before changing again. You've been 2 months or so on 50 mcg; so this is about right, timewise.

Don't take your levo that morning and have the blood taken as early as you can.

If your thyroid is wonky you won't absorb nutrients the way a healthy person would and will need a good multi-vitamin including Vits B12, C, D3 and minerals zinc, selenium, magnesium and iron if you can tolerate it. You may also be dealing with exhausted Adrenal glands (sounds like you've got loads going on in your life currently!). So supplement those too. There is a good range shown on Amazon, raw adrenal and ones suitable for vegetarians too. If you're lucky your doc may test your vits and mins. But if not (and/or while you're waiting) get some good quality ones inside you anyway. They cannot do harm and you may be surprised at how much they help.

Hope you feel better real soon.

kirsty1946 profile image
kirsty1946 in reply to

Thank you for your advice. Wondered if adrenals could be playing a part. I feel exhausted pretty much all day yet my energy levels peak about 8pm onwards?! The blood tests will be to confirm TSH and FT4 levels but worried they will show normal when I feel far from normal. My TSH was only 0.96 in july with FT4 of 12.6 n told I was normal...granted I did not feel then like I do now but have been told normal for years with a million symptoms. Only reason I got diagnosed is my TSH shot from 0.96 to 10.7 in 3 months not quite sure why either?? Any ideas?? Off to check amazon for help with adrenals :-) xx

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