Update and Advice please: Happy Monday everyone... - Thyroid UK

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Update and Advice please

Pooty profile image
7 Replies

Happy Monday everyone. Please can I ask for more advice from this wonderful group.

So I started on the 75 Levo on the 19 January.

50 (Accord) 25(Teva). My first few days on the extra 25 Levo I had bad headaches. Still having them but they are manageable. My moods have got much better over the weeks, my joints are still painful. My weight is out of control. I went from 66kg up to 68.8 kg in a week. I am gluten free and dairy free. I do like sweets but am trying hard not to have sugar. New symptoms are: running nose feels like it’s my sinuses, which I think is causing my headaches. Also sneezing a lot. Still having itchy skin and my feet are burning. My palpitations are terrible. At times it feels like my heart is racing through my chest and it’s going to burst and I feel like my head goes all fuzzy from this. Still suffering from swollen eyes and eyelids.

My latest results from Calcium and Vit D are;

Serum calcium 2.20 mmol/L (normal range 2.10-2.55) Serum albumin 39 g/l ( normal range 35-50) calcium corrected 2.22 mmol/L (normal range 2.10-2.55)

Vit D - 25 Hydroxy Vit D (total) 63.6 mmol/L ( normal range 50 - 150) this has gone up a bit from my last results. Serum inorganic phosphate 0.60mmol/L ( normal range 0.8 - 1.5). Serum total protein : 66 g/l ( normal range 64 - 83)

I am due to have new bloods on the 20/2/23 to test my TH levels.

Please can you help me with more advice.

Warmly 🫶

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Pooty
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7 Replies
Jaydee1507 profile image
Jaydee1507Administrator

What would you like more advice about? You're just over 2 weeks in from a dose increase which in itself can cause symptoms to change. You're also on a relatively low dose according to your weight so will still be feeling hypo symptoms.

It's an awful journey to be honest. You need to hang in there and slog it out while being very, very patient.

Will GP test your key vitamins - ferritin, folate, B12 & D3? If not then check out private companies as low vitamins will add onto hypo symptoms. Even with the best diet we get poor absorption of vits due to low stomach acid.

thyroiduk.org/help-and-supp...

Also, if you can keep both 50 & 25mcg tablets to the same brand you will know where you are.

tattybogle profile image
tattybogle

I am due to have new bloods on the 20/2/23 to test my TH levels.

is that date a typo Pooty ?

That would be only ? 4 and a half weeks since you increased to 75mcg .. which is technically a bit too soon for the TSH to give a true indication of the effect of the 75mcg dose .

6 weeks is a better idea .

on the one hand it might seem a good idea to 'get on with it' as soon as possible if a dose increase is going to be needed anyway... but on the other hand if re test is done too soon the TSH may have initially fallen (in response to the increase to 75mcg) but not had enough time to rise again if 75mcg is not actually enough .. if the GP sees the TSH when it's still lowish from it's initial response to a recent increase , they may not agree to increase the dose and would leave you stuck on 75mcg for another 3 months or even longer.

headache when increasing is not uncommon for the first couple of weeks or so but .. hopefully it will disappear .

it's only been 18 days on the 75mcg dose .. so give it time for the body to get used to the increase . It takes about a week and a half for the T4 levels from the increased dose to build up in the blood .. so you've only just got to the full effect of 75mcg .. so see how you feel over the next 3/4 weeks once the body has had change to start functioning at the new level .

might be worth asking GP to change the next prescription for the 25mcg to say half a 50mcg so you can have Accord instead of Teva .. and that would rule out whether Teva brand is causing problems for you .

(or there are other manufacturers who make 25mcg tablets Wockhardt/ Mercury which people who have issues with Teva can usually take without any issues.. eg i now have my prescription made up with "not Teva " by the chemist rather than the GP specifying a particular brand, )

Pooty profile image
Pooty in reply totattybogle

Hello , thank you so much for replying.

Yes the date for next blood tests is the 20/2/23. Would you suggest that I ask for the date to be moved to a later one?

My main concern is my heart palpitations which some times makes me dizzy and I feel light headed. This doesn’t feel normal to me!! Would this be a symptom of possibly having too much Levo? If so what would you suggest.

I’m taking 2000 I.U. Vit d daily. I increased this from 1000 to 2000 and am wondering if I’m not taking too much which could be causing my palpitations?

I’m concerned that I’m not taking enough supplements to help my treatment. I take the 2000iu Vit d and B -100 complex and 600mg Turmeric + black pepper daily. I need to get magnesium and start taking that.

I did ask the pharmacy for the same brand but they were adamant about giving me Teva even after I said that I wanted the same. I will ask my GP to state no TEVA on my next script.

What would the reason be for my weight gain. My normal weight was between 60-62. I am 5.4ft. I feel so uncomfortable.

What would the reason for the headache’s ?

Thank you again for replying I appreciate your response and guidance.

tattybogle profile image
tattybogle in reply toPooty

When it's only been a couple of weeks on the new dose , you can't tell anything much by symptoms at that point .. your symptoms will change over the next few weeks as the dose settles in , and the your body decides if it's a big enough dose yet or if it want's a higher dose .

You may get symptoms that feel like 'a bit too much' for a week or so then you might feel quite a bit better for a week or so, and think "great , its working" .. then you might go back to how you felt before you increased to 75mcg .and wonder why it's "stopped working" all of this is usual .

Once you are on the best dose for you AND have been on it for a few weeks THEN you wil hopefully feel consitently better .

More thyroid hormone basically makes everything in the body try to go a bit faster ( when it has got used to going a bit slower .. so some bits will temporarily object to speeding up )

While the body gets used to that new speed of working .. random things like headaches do happen ~ so don't worry about stuff like palpitations and headaches ( or weight gain) for the first few weeks after an increase . it's normal to feel all sorts as the body tries to change the speed it does things.

personally , i think i would reschedule the blood test for closer to 6 weeks after you increased if you can , since your TSH was already in range on 50mcg and the GP was reluctant to increase to 75mcg .

Most people do end up needing more that 75mcg before they feel consistently better ......but since GP's will make their mind up based largely on TSH level , if you don't allow your TSH time to react fully and rise again if 75mcg is not enough ... you may be stuck on 75mcg until you can persuade them to test again , which may not be for another 3 months... or longer.

*Note .. get an early morning blood test NOT one later in the day ...even if you have to wait a few weeks for the right appointment..... your TSH will be a bit higher at 9 am than it will at 12-3pm .... so a 9 am blood test might result in "yes you can try increasing the dose if you want" when a 2pm test might result in "no you can't"

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

this list of references recommending GPs keep TSH below 2/ 2.5 ish may come in handy if you come up against a GP who doesn't want to allow an increase in dose "because your TSH in 'in range' now" healthunlocked.com/thyroidu....

tattybogle profile image
tattybogle

ps .. i'm rubbish at vitamins ,, so i'll tag SlowDragon to look at the VitD dose

SlowDragon profile image
SlowDragonAdministrator

previous post with in-depth replies re vitamins and supplements

healthunlocked.com/thyroidu...

With such low B12 you need a separate B12 supplement as well as daily vitamin B complex

Remember to stop B complex 3-5 days before next blood test

It’s common to initially feel worse after each dose increase…..no point testing until been on unchanging dose levothyroxine at least 6-8 weeks

Pooty profile image
Pooty in reply toSlowDragon

thank you very much for your advice I will have a look at the link re the supplements.

Many thanks

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