Any help for a newbie...?: Hi all.. I was... - Thyroid UK

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Any help for a newbie...?

Ollyburr profile image
6 Replies

Hi all.. I was diagnosed with Hashimotos at the start of this year. I was on 25 mcg of Levothyroxine until September... TSH of 3.9 on this. My Doctor increased to 50mcg in September and TSH 3 weeks ago was 1.7. For the last 3 weeks I have had really bad insomnia and my skin itches all over. I woke up this morning with hives on my side, leg and quite a few around my ankle. Went to see my doctor and she said they are bites, they are definitely not bites as they don't itch. The ones around my ankle are quite swollen and burn. Unfortunately my doctor won't run any tests on my T3 or T4 and at last count when all this started my antibodies where off the scale. I begged today to see a specialist and they said they would refer me but I think that was to get my out the room! I have not taken my levo this morning as I think these symptoms are all down to the increase. Can anybody out there relate or shed any light? Thank you in advance for reading!

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Ollyburr
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Heloise profile image
Heloise

I've had hives once in my life and had no idea what caused them. If you feel the increase is behind your outbreak, perhaps it's due to fillers in the tablet. It's not a good idea to stop taking your hormone since your TSH is high. Ask for a different brand.

Ollyburr profile image
Ollyburr in reply to Heloise

Thank you so much for replying. The doctors answer was to reduce my dose. Are there other brands?

SlowDragon profile image
SlowDragonAdministrator

It's quite common to get insomnia and anxiety as we increase the dose. Though it doesn't necessarily mean you don't need the higher dose.

You might need to reduce back a little while you get use to it. Often recommended if struggling to cope with increase to go up in smaller step to 25/50mcg alternate days for a few weeks/months while wait for body to adjust. Then have thyroid blood test to see where you are and step up to 50mcg daily after this. Always get tested 6-8 weeks after each increase

Usual advice on ALL thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

(NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)

ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.

If you have antibodies (Hashimoto's) then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance

Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this.

Read as much as you can on here and Thyroid UK

Also other good sites are Chris Kresser, The thyroid pharmacist, Amy Myers

Heloise profile image
Heloise

Yes, there are many different brands of T4 as well as NDT. This website is helpful and scroll down to the different brands. Synthroid is the big name brand but there are many cheaper genetics. Use the search for any information you need about Hashimoto's which you must surely have. This is an autoimmune condition and often it is due to gluten for Hypothyroid. You may find your antibodies reducing if you can go gluten free.

stopthethyroidmadness.com/n...

helvella profile image
helvellaAdministratorThyroid UK in reply to Heloise

Synthroid is effectively unobtainable in the UK.

The makes Ollyburr would be likely to have a chance of getting as a substitute in the UK are:

MercuryPharma (whether labelled Eltroxin or not)

Teva

Acatavis

Wockhardt

helvella profile image
helvellaAdministratorThyroid UK

Please consider taking one or other of the usual over-the-counter antihistamine tablets. E.g. Cetirizine. Any make should be fine but you might wish to try more than one. In my view, absolutely not worth paying for any brand over supermarket own-label!

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