Do I need to increase my Levo?: Hi folks, I have... - Thyroid UK

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Do I need to increase my Levo?

Bookworm63
Bookworm63

Hi folks, I have been on Levo 50mcg since March 1st 2019. Originally back in November last year I was told I was borderline Hypo TSH 4.24. I went back for testing in February this year and I was told my level had got higher but I wasn’t told what it was. As I was achy and cold and symptomatic I was put on 50mcg Levo. Began to get better quite quickly. The aching took a few days to disappear but I could tell it was going. Knew I had a problem with lactose but seemed to be tolerating the pill ok. After about six weeks I had what I can only describe as a lactose build up. Suddenly felt very nauseous had diarrhoea and started to feel hypo again. Stopped taking the Levo for a few days and tummy went back to normal. Went for another blood test in May and was only given my TSH and free T4 level TSH 1.75 miu/L (0.27-4.20) free T4 level 19.3 pmol/L (12.0-22.0). Dr said TSH was high so no need to increase meds. I still felt very tired, had all my Vit levels done and iron etc and was told slightly low on Vit D recommend to take OTC supplement. So have been taking 25ug supplement and have to say my my mood and energy did lift. However I’ve always felt I don’t absorb the Levo all that well because of the lactose and I have tried various methods to alleviate that. The Dr gave me six months worth of 50mcg Levo prescription which is now held at Boots pharmacy. So I feel a bit stuck as I have days of feeling not great but ok and days where I’m very tired and have some of my hypo symptoms back. I only got to grips with this site after all my blood tests were done so wasn’t up to speed on getting all my results printed off so apologies for the lack of info on that score. The last week or so I have been very constipated & some days feeling achy and hypo again. So I’m starting to think maybe I need to go up a bit on the Levo and that I’m just a bit under medicated. Any thoughts would be much appreciated.

8 Replies
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Teva levo is lactose free but some on here have had problems with it, Looks like you need an increase but you need to know your FT3 result ,which the NHS rarely tests, and B12

D3, folate and ferritin.

Bookworm63
Bookworm63 in reply to Treepie

Thanks Treepie I was thinking about taking a private test so that I can get a better idea of what’s going on. I had no idea at the time I had my last NHS tests you could ask for the results and have them interpreted on here but I’m living and learning. Tried Teva and although I think I was ok with the thyroxine element, in fact I could feel it was making me feel better in many ways but I had really bad constipation on those and it felt like nothing was moving at all so eventually I felt sick. Seems I have a problem with fillers. At least with Amus I can go to the loo and feel movement in my tummy. Thanks for your suggestion will look into it.

Treepie
Treepie in reply to Bookworm63

Missed B12 from the vitamin list.Suggest you read up on the Thyroid UK web site for more information.

SlowDragon
SlowDragonAdministrator

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Standard starter dose is 50mcg. Bloods should be retested 6-8 weeks after each dose increase, (or brand change) in Levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Suggest you see GP and ask for thyroid testing including antibodies and vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

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 are very common too, especially gluten. Lactose intolerance is almost as common

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

ALWAYS get actual results and ranges on all blood tests

How low was vitamin D?

Thanks for the info SlowDragon. When I first went to GP for thyroid tests I had no idea about any of this and didn’t realise you could ask for results to be printed. It has taken me some time to get my head around all of the necessary information I need. My surgery doesn’t have patient access online although they advertise it on their noticeboard! When I had my vitamin levels checked in May all I was told by the receptionist was that everything was normal except my Vit D which was slightly low, suggest taking an OTC supplement. So as I was pretty clueless I just went and bought the standard 25ug and have been taking that every day. I take my Levo early in the morning it’s usually 2 hours before I eat or drink anything. Lately I’ve been having porridge made with lactose free milk so maybe I’ll try it made with water. I used to have toast but I was having heartburn issues and I think the switch to porridge has helped with that. The GP did test my antibodies when I went in February and when I asked about the result she just said they’re ok 🤷‍♀️. The only result I have had printed out is for the test I had in May. TSH level 1.75 miu/L (0.27 - 4.20) free T4 level 19.3 pmol/L (12.0 - 22.0) Also my surgery will only do blood tests for thyroid levels every three months so i can’t go back and ask for another one until beginning of August. I will go back and ask for a printout for my vitamin etc blood tests that I had done in May and maybe that will give me some idea of what my position is as regards that end of things. Thanks for the information I may well have a private blood test although I’m extremely squeamish at the best of times! When I first went to the GP she said “oh that’s easily treatable “ and I thought great! One little pill and I’m sorted! How naive was I ?

TEVA is as far as I'm aware the onlynedication for lactose intolerance and possibly got its 'bad' reports as it wasseemibgly given out without that being taken into consideration, hence the number with problems. It may be easier for you to stick with the TEVA and then address the gut issues which is quite common and could well improve when better medicated.

Ivsee rgatcyour vitamin D is low and you have started supplementing. Usually if wexneed to supplement itsxydually for life and with Vit D you need to take co factors. When wextake Vit D (D3) then we also increase calcium in the blood which isn't a good thing. Excess calcium can give you kidney and gall stones and calcified muscle so to avoid this we are advised to take the co factors, K2 and Magnesium. K2 takes the excess calcium out of the blood and puts it in the bones and teeth and Magnesium locks it in there. Magnesium helps with bowel movement as well! Getting the thyroid medication correct is obviously important but there are other factors as well which your doctor probably won't be aware of. This forum is run by Thyroid UK so well worth looking at their site as lots of good info plus things not to do as well.

Thank you Silverfox7. Yes I did read on here somewhere about K2 and magnesium so will get some of that too. I have to be careful what supplements I take as sometimes they don’t agree with me either. Such a sensitive tummy!

Poor you. Best to start low or every other day and not add too many new things as well. I would start with a little Magnesium as that helps both the Vit D and constipation.

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