My story is abit complex with my under active thyroid diagnosis please excuse the essay!
I’m back again following a 7 month gap off of Levothyroxine following awful side affects and being diagnosed with thyroiditis with TPO antibody readings of over 1000 following few months after birth of baby in 2017. I came off the medication after 9 months treatment because the symptoms of being on the medication for me were so much worse than being hypo and I was told as I was boarderline levels under 7 TSH I could stop them which at the time was all I wanted to do and it worked all the “side effects” disappeared.
The side effect symptoms for me were instant after a couple of days following starting Levothyroxine which were Muscle joint pain weakness, twitches pins and needles, weakness and I felt like my body wasn’t my own, very peculiar. I even had neuro referral at the time who could not pin point a neuro diagnosis.
So when I stopped the medication last summer I was on 75mcg the symptoms went away and I felt myself again albeit super tired constipated dry skin etc etc
Gp does not believe it’s medication related or doesn’t want to bother and has basically said I need to deal with the side effects because I need Levothyroxine.
In the gap of stopping medication i have taken vit supplements b12 b complex Vit D and I have felt “myself” again which has been great but I know I’m ignoring a health issue.
I have had a recent nhs blood test and my TSH is 13 and my T4 12.4 within range but lower side. (Will have to find results somewhere) so I have been put back on 25mcg Levothyroxine . I have been on it a week and already I am experiencing the neuro symptoms again and joint pains surely it’s not a coincidence!
Do you think my issues are with the Levothyroxine? Or just an incorrectly treated under active thyroid. Should I try an alternative route? I’m not sure what to do next.
I will also add that I’m a working 36 year old mum of 4 running on low power 24/7!!
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Tiff35
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Thanks for posting your history in your profile and to have four children to look after plus all the other things we've to do, I feel for you.
The fact is that few doctors know how best to help us recover if levothyroxine doesn't do what is supposed to do, i.e. improve symptoms and make us feel better and then no symptoms at all.
First of all your dose is so small it can rebound and not improve anything.
So, it is either that your dose is too low unless your are very frail with a heart disease and should be increased.
A starting dose of between 50mcg and 100mcg levothyroxine as your TSH is over-range for the initital diagnosis. An increase of 25mcg levo is every six weeks after a blood test is the usual way to treat.
Some of us cannot cope with a synthetic hormone and there are options but none are now prescribed by the NHS.
This is the procedure for blood tests - just in case you aren't aware.
All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. It should also be swallowed with one full glass of water and wait an hour before eating.
Ask your doctor if your prescription can be increased as you are feeling much worse.
It's too early yet to try options as that can be difficult sourcing.
Two excerpts from the following link:
" 3. Who can and can't take levothyroxine.
Levothyroxine can be taken by adults and children. However, levothyroxine isn't suitable for some people.
Do not take levothyroxine and go back to your doctor to discuss your treatment if you have:
had an allergic reaction to levothyroxine or any other medicines in the past
an overactive thyroid (hyperthyroidism)
a health problem that affects your adrenal glands (your doctor will be able to tell you if you're not sure)
and
your doctor will tell you how many tablets to take each day.
The dose of levothyroxine varies from person to person.
Although starting doses are usually the same, the dose of levothyroxine you end up taking, or how quickly the dose is increased, depends on your symptoms, hormone levels, age and whether you have any other health problems.
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Thank you for the information! Im thinking after my next blood test I may need to change GPs as she is reluctant to give higher doses and thinks TSH doesn’t need treating if under 10!
Do you know by any chance if and what the NHS recommendation is for TSH levels when being treated with levothyroxine? I have read that medication for over 10 is for those untreated.
It is not our fault that the majority of doctors and endocrinologists think that it is 'easy' to diagnose hypo i.e. if TSH goes above 3. That's nonsense of course if we add in our clinical symptoms.
Before blood tests and levo were introduced we were all diagnosed upom clinical symptoms and given a 'trial' of NDT. (natural dessicated thyroid hormones which contain all of the hormones a healthy gland would do).
That’s really useful information thank you very much!
I initially tried Tevo brand but pharmacy recommended mercury. To be honest over the last few days I seem to be bearing them better (the joint pains have eased which were the most frustrating) so perhaps I should stick with these abit longer.
I actually think my GP needs changing she doesn’t think it needs treating if TSH is under 10! The problem is the hypo symptoms are worse right now than better with this low dose.
The problem is the hypo symptoms are worse right now than better with this low dose.
That's about right with a dose of 25mcg unless elderly or have a heart condition. It will stop (or reduce) the amount of hormone your thyroid gland is producing itself, but it's not enough to replace it or give you more. Starting dose should be 50mcg, increasing by 25mcg every 6 weeks, until you reach the dose required for your hormone levels to be where you feel well.
Perhaps you were just used to feeling hypo " super tired constipated dry skin" all sounds like hypo to me. The other symptoms could have been caused by sensitivity to fillers in the tablets (eg acacia or lactose) or by low vitamins (which you are now supplementing, but you didn't say whether you were taking them at the same time as levo. There is nothing "borderline" about a TSH of 4-7; most healthy people are around 1.2. You need to post your actual results, with ranges for TSH, TPO and TG anitbodies, Free T4, free T3, B12. folate, ferritin and vitamin D so that people can help you. Your symptoms scream hypothyroid and untreated hypo can lead to heart problems and dementia. so shouldn't be ignored. 25mcg of levo is not even the recommended starter dose and will probably make you feel worse.
Thanks for your honesty I think you are right. I think I will retest my bloods (only had T4 and TSH recently) and change GP as she seems very stuck on numbers ...under 10 TSH and it’s fine apprently!
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