New Here and Fed Up

Hi I am new here.

I needed somewhere to offload so hope it's OK. I will probably sound like a Debbie Downer but I feel like I am starting to go insane. I have struggled with anxiety my whole life but since being put on Levothyroxine I have gone back to my worst times.

Brief history - My Mum has an Under active Thyroid and she had trouble conceiving me. So when my partner and I had been trying to start a family and nothing was happening we went to get some tests and everything was coming back fine..

However my Thyroid came back Borderline (around 6.5 I believe) so my Doctor asked if I wanted to try Levothyroxine to see if that would help incase it was the problem and after reading online that it could be a cause I said sure!

I had been having some symptoms for a while anyway and my mum always said I should get my Thyroid checked but it's something that always seemed to be shrugged off. So here I am months on and I feel a mess, I have not had a period since starting medication so feel even more frustrated! I constantly feel worried these days and upset. Now I am by no means skinny and a double chin is totally normal for me but it looks 3 times the size lately and today I noticed I have big teeth marks on the sides of my tongue (so freaking out thinking the worst).

The first make of tablets I was on helped - I started to feel less drained and tired and generally felt a little better. Then my prescription was due and the pharmacy gave me another make of the tablets and I started to feel bad again and then I have Just got ANOTHER make this time round and They Just seem to be making me feel crazy, I even feel crazy blaming the tablets surely they are all the same?

I am not sure my body can tolerate the constant change. My Doctor could not care less - I constantly feel like I am a problem when I go into see her because I have lots of questions I am never even given proper results from tests. How often should I be getting blood tests? When I was first being checked to see if the borderline got better or worse on its own she was supposed to see me 6 months later but she forgot and called me back in over a year later! Then said I should of arrange the test myself despite her saying she had to put the request in, she only did it when I mentioned it!

I don't know what to do. I don't know how I am supposed to feel and I now Just feel like this is my life now feeling like rubbish and being unhealthy at 31 is not much fun. My anxiety drives me wild like this is it now it will be one thing after another.

I am really sorry to rant and moan and I know its long but its 1am I cannot sleep and driving myself mad so really wanted to come and chat. I am over whelmed.

9 Replies

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  • Ok for starters you are legally entitled tohave the results of all tests

    A TSH of 6.5 is not borderline its hypothyroid

    What must also be tested is

    Freet4

    Preferably freet3 but the NHS often will not test that

    Ferritin

    Folate

    B12

    Vit d3

    Must also be tested and must be halfway in their ranges otherwise your body cannot utilise the levothyroxine which is T4 and convert it into the T3 that every single body cell needs to function

    You should always have blood rechecked 6 weeks after initial dose and the dose raised by 25 or 50mcg until TSH is 1.0 or below and free T4 is more like 19 and freet3 more like 5.5

    After that initial 6 weeks you should be tested every month

    Always arrznge blood tests for very early morning , fasting drinking only water and never never take your levo in the previous 24 hours

    You need to find out which make you started on that was OK because often the different fillers in different brands can cause trouble ...ie acacia in TEVA is no good for someone with hayfever

    You should really have Thyroid Antibodies checked because its likely you have Hashimotos

    And you do need to realise that any child coukd very well inherit anyone of several auto immune diseases so do please think very carefully about this

  • Always make sure your pharmacist gives you the same levothyroxine each time. Tell him you want so and so made by 'pharmaceutical company'. I do so and I'm sure many others also.

    Sometimes our body doesn't like something in the replacement hormone. The hormone itself won't bother us but sometimes fillers/binders do.

    Some autoimmune conditions run in families. I have hypo and pernicious anaemia, my mother had P.A.

    Many countries prescribe when patients' TSH goes over 3+. In UK doctor's seem to wait till it's 10. Anyway you have been diagnosed so follow reallyfedup123's advice re earliest blood test etc. and frequent blood test. The aim is that the doctor increases your dose of levo until the TSH is 1 or lower. He may not be aware of that as most times they think 'in range' is good - not if it is towards the high end instead of 1 or below.

    Always get a print-out of your results from the surgery, with the ranges. Ranges are important as labs differ and it is easier for members to respond to them.

    Everything in our body is affected with hypothyroidism, from head to toe and particularly periods, either insufficient or too much.

  • I'm a great believer in finding something that works and sticking to it. Two reasons, fillers can give you an allergic reaction so no one wants that but also different brands can vary very slightly so best to pick on a brand and then work out what dose you need on that brand. So I would go back on the first one that you were happy with and ask the pharmacy to put that on your record to be dispensed if the won't do that then you will have to ask your GP to name it on your prescription. Get your bloods tested again and see what is happening. Best then to let us know what your readings are like and we can take it from there. Be aware that you may not get a FT3 reading so put aside a thyroid test fund if you can do that when your TSH and FT4 are in the right area you can get a full set done to complete the picture. To get to that point take note of each dose and how you feel. Look of the Thyroid Uk site and read the info on there as lots of hints and also look the list of symptoms as see what you have and make a note how each of those if progressing how time goes on.

    There are two testing firms the group recommends and the links will be on the site but Blue Horizon and MediChecks so have a look at the tests offered and the cost, they both give offers which is useful, MediChecks are on Thursdays. It also sounds D though your doctor isn't up to speck on trying to start a family. My children arrived before I had a problem so my knowledge is limited but hopefully someone with more experience will advise. If when results are in the right ball park and you find your doctor hasn't a. Lie then ask to see an Endocrinologist who hopefully can help with that but let's get you feeling well first. Take special note of how to take your meds correctly and do's and donts on the site as that will help you get stable quicker and remember that if you get a dose increase you need to test bloods 6 weeks later to see if levels are correct of that you need another increase which are done in 25 mcg increments.

  • scalloped tongue is often a sign of vitamin B12 deficiency. You are much more likely to have gut/absorption problems if you have antibodies and very likely your VitD is very low too. I can highly recommend Medichecks and Blue Horizon, both do finger prick blood tests, results come back very quickly to you. You are then in control of the situation not some useless GP!

    Unless your vits and iron are at good levels (see Seasise Susie on this site) then your meds won't work. Many of us have probs with the fillers in levo tablets. I cannot tolerate Mercury Pharma or Teva. I stick to Actavis/Almus usually supplied by Boots. If you do have raised antibodies you are best to go Gluten free, made a big difference to me. Hope you get some answers/ results could take a while to be optimally treated.

  • Wow, I love that I found this community. Great answers. As for the anxiety, another angle to consider is that the thyroid hormone replacement is upregulating all of the metabolic pathways in your body, but you might not have enough vitamin and mineral cofactors to stop your brain from getting all jammed up by this upregulation. The place to start here is with magnesium and vitamin b6 (as they are necessary in almost every pathway that breaks down excitatory neurotransmitters). My guess is that you have some SNPs (single nucleotide polymorphisms) in the COMT pathways (which basically means you've got some roadblocks which are causing a traffic jam of neurotransmitters and magnesium and b6 will be your most helpful in clearing those out). You might want to consider getting a 23andme test done if you are interested in learning more about this. I have not started practicing in the U.K. Yet, but Tom Greenfield a fellow naturopathic doctor seems to have a good handle on working with patients in this capacity.

  • Dear MillieMuffin

    I'm so sorry that you are struggling so hard with levothyroxine. You've been given some great advice her regarding testing etc and you probably know already that monotherapy is a sticky plaster! May I suggest Brasil nuts, eat a few per day with some effervescent vit-b complex to wash them down. It's quite nice.. Also check vit D and supplement if low. But most of all, and this is the one I am fighting for my life with. SUGAR, eliminate it from your diet wherever possible. Sub it with stevia or honey. Sugar will make you feel worse. Also try to cut out dairy and bread as much as you can and EXERCISE as much as you can. You'll feel better, the doctors won't help you!!! You must help yourself.

    I wish you and all other fellow sufferers all the best and long may this forum continue, all power to those who populate it and those who represent us.

  • If you can afford it get private testing done many of us on here have given up using NHS - labs don't do full testing

    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 money off offers.

    All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

    Essential to check levels of vitamin D, folate, ferritin and B12 plus thyroid antibodies and FT3

    If you have high antibodies this means you have Hashimoto's or autoimmune thyroid disease

    With Hashimoto's the majority find strictly gluten free diet helps reduce symptoms

    It might also reduce anxiety astonishingly (did for me) see this link about gluten and anxiety

    ncbi.nlm.nih.gov/pmc/articl...

    For conception it's advised TSH should be under 2 (I think)

    The Thyroid Pharmacist has info about pregnancy and Hashimoto's

    thyroidpharmacist.com/artic...

  • You've already learned more from these posters in a few minutes than any help the NHS is offering you. If you can afford to, I would fire the NHS. I would tell you what I think about the NHS after reading posts such as yours, thousands of them over five years, but I'd probably be arrested. It's almost criminal. Now I'm ranting. The thyroid and adrenals are very codependent so i would take heed of the advice for supplementing. I think your adrenals are being extremely stressed because of your low thyroid because they try to make up the deficient thyroid. They use adrenaline for one thing and this uses massive magnesium and vitamin C as has been mentioned, they also need to steal progesterone, adrenals make sex hormones from cholesterol (yours is probably high due to this need). You need progesterone for childbearing. To deny you the support you need for one of the most important biological functions in the human experience makes my blood boil.

    Millie, you are simply going to have to learn much of this yourself but you have plenty of help. Read and watch the videos because there are doctors who KNOW what happens when your thyroid loses its capacity to produce hormone through no fault of its own by the way.

    This is a start.

  • You don't say how much levothyroxine you are on but I expect you are still on the original dose if you have not been tested.

    If that is the case, the reason why the original tablets seemed to help is because your body was gasping for thyroid hormone, and it gulped it down, but by not taking enough you are back to square one.

    You have some great advice above, please take it in carefully and if you can, change your doctor. If you are overweight then doctors often put everything down to that, your thyroid controls your metabolism and dieting when hypothyroid can make every calorie lay down as fat, so don't worry about the weight at the moment, when you are optimal, you will lose weight.

    keep posting here and do some research. You may find that levo does not convert in your body, in which case you may need liothyronine, but you would need to go through the motions first with your GP to get to an accepted level of bloods and still not have enough T3 in the system.

    You can fight this, we are with you, so get some bloods done (I think someone already said first thing in the morning, no caffeine, etc).

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