New here :-) Please forgive the waffly introduction!

Hello all,

I came away from my doctor's last Friday - so just over a week ago - with a diagnosis of hypothyroidism. It was unexpected, although it has since explained some lingering symptoms, carpel tunnel syndrome being one.

I had originally gone to the doc's as I had been experiencing heart palpitations on & off for about six months (well, actually, I do remember having had episodes in the past & in all three of my pregnancies - but I suppose I had started to become more aware of them). I had attributed them to stress: eldest daughter recently diagnosed with Coeliacs, just moved house, have three children under 5, my husband & daughter both recently had ops. Life is busy & I have always managed to reason away any symptoms that had the potential to concern me.

Anyway, my husband had been prompting me about the doc's for ages & when I finally got around to it, ECG was fine (thank God) & I went away after they'd done some routine blood tests. Was not expecting anything to come back but they revealed a T4 level of 5.7 & TSH of 70.51, indicating overt hypothyroidism. I was started on 50mcg of Levothyroxine.

They didn't test for the presence of anti-bodies, but the doctor has requested this on the next round of bloods - scheduled a few weeks away - and he is expecting that Hashimoto's will be the likely diagnosis, especially given my daughter's Coeliacs.

Although my levels would suggest otherwise, the thing is that I didn't feel too bad before. However, a few days after I started on medication I plummeted. On Monday I was crying for no reason, very irritable, feeling very down and slumped on the sofa. I went back to doc's & they agreed to up my dose to 75mcg. I must say my mood has lifted a little since then - not completely but significantly - but I am struggling with all sorts of other symptoms that were never an issue before and feel more symptomatic of someone with hypothyroidism than ever! I got tonsillitis on the Tuesday: went to bed with a painful swallow and woke up with white spots all over my tonsils (am on anti-biotics for this and my tonsils looks a lot clearer now but my throat still feels tight, swollen, tender and aches to swallow). I have also had a severe headache for over two days, around either side and also the base of my skull at the back, accompanied by a weird sort of 'lightness' where I don't feel dizzy per se but just a bit outer-body! Hard to explain. Not nice anyway - & I don't usually suffer from headaches.

I am wondering where to go from here. Do I ask for another increase in dose or is it too soon? Are my experiences familiar to anyone else's?

I have done as much reading as I can since being diagnosed, as I know very little about the thyroid. I have learned a lot in a short space of time and have been really grateful for Google searches &, in particular, often being directed here to various threads started in this forum. It has been so helpful, hence why I decided to sign up myself!

The most interesting thing to me at the moment is this issue of Hashimoto's. If the results confirm the presence of anti-bodies &, therefore, the diagnosis of autoimmune thyroiditis, I would find that very interesting, personally. From what I have read, it seems that many people can live with various symptoms of a thyroid issue, without there being anything clinically wrong with the thyroid, i.e. symptoms of Hashimoto's but with thyroid levels within the normal ranges.

Interestingly, I became quite debilitatingly ill back in September 2009 & was eventually signed off work (from my first ever teaching job). It was off the back of a particularly stressful few years, which included a broken engagement, a PGCE, a move to a big city & getting married (to the right man, thank God!) I became out-of-the-blue tired, to the point I didn't want to move from the bed or chair; I became anxious about leaving the house; I first experienced heart palpitations during that time; I became quite depressed. Since then (& I did make a recovery & commence work again but in a very different job) I have had a propensity toward 'low' spells & had another episode of depression a few years back (interestingly, at that time, my thyroid levels were borderline but not worth treating, it was argued; but of course antibodies have never been tested and I just wonder for how long I may have had Hashimoto's - if it proves to be a correct diagnosis - without having become overtly hypothyroid. I suppose I also wonder whether, if tests for antibodies became more routine in thyroid testing, preventative measures could be put in place to stop or at least diminish the chance of hypothyroidism developing. Too late for me but perhaps not for others?)

I also have had a miscarriage, as well as one of our children having been born eight weeks prematurely. All these things could possibly tie in to a Hashimoto's diagnosis, could they not? - even before having become overtly hypothyroid?

Anyway, I didn't really mean to go on for so long but I am finding the surround issues quite interesting to think about. However, the main issue for me at this point is that I am not feeling well, on 75mcg of Levothyroxine and I wonder about asking for another 25mcg increase given my symptoms...

Any thoughts (if you have even managed to read to the end of this!!)?

Thank you in advance.

Skip

Featured Content

Join our community

The community helps everyone affected by thyroid conditions by providing support, information and guidance.

Follow

Featured by HealthUnlocked

16 Replies

oldest β€’ newest
  • Other people far more knowledgeable than me will I'm sure respond to you soon.

    But in regards to the odd lightheaded/not dizzy but odd feelings - I had the same not quite dizzy but feeling odd.My endocrinologist tested for vitamin D and found I was deficient and since supplementing with Vit-D it has gone as has the depression and crying. So my advice would be to ensure along with everything else to get your vitamin D tested.

  • Thank you. I will check my results to see what else was tested and if Vit. D is not on there will ask that we can check it next time. Thanks for your reply.

  • Hi Adalia

    So sorry to hear your feeling bad. But very glad you've found this forum. It is a wonderful place with many knowledgeable and generous people. Unfortunately I'm not that knowledgeable, compared to many. It does sound like your not tolerating levo very well. Although it does take time, a lot of time, for your body to absorb and fully utilise the meds. So its early days. But after giving that a go for a few months and your bloods looking better and you still feel bad. Then it may be worth you trying NDT ( naturally desiccated thyroxine ) or t3 only a go, probably the later to start with.

    You suspect you are hashimotos, have gone gluten free ? It will make a difference. But I'm guessing from how informed you are over a relatively short length of time, the answer to that is yes. You may find a post I put up half an hour or so ago interesting reading - title - Interesting Reading !

    Most doctors cant / wont test T3. So it would be a good idea for you to have a private blood test done. Check out medichecks or blue horizon. A good starting one is blue horizon plus 11( it will check all key nutrients including vit D ) As this will also check all your key nutrients that are important in conversion ( from t4 to t3 ). It is also important to get your t3 tested at the same time as your t4. ( I'm not on commission but wish I was lol )

    I completely understand what you say regards having hashi or under active thyroid for some time. I was diagnosed at 18 ( now 48 and just getting going on my journey to health trying t3 with t4 ) but definitely had symptoms for many many years before. I'm not hashi but I am coeliac, diagnosed at 29. There is research to say that they are linked, so one to be aware of for your daughter.

    Hopefully shaws will come along and advise you because I know she couldn't tolerate levo and has gone on to t3 only, also UrsaP is the same. Both may have a better insight than I on how your reacting to levo.

    I look forward to your future posts. And good luck in finding the right solution for you as soon as possible. But your definately n the right place !

  • Thank you so much for replying. Plenty of food for thought there, both to look in to myself and also to take o my doctor. Thank you.

  • So glad I found this site 😍

  • Hi - it is very early days for you with treatment and your body can take a while to adjust to the medication. You are tampering with your whole body control system and that can cause any amount of issues for a while. But because the thyroid is central to this it is important not to increase dose too quickly - to do so can be a major shock to the system and can actually be dangerous. Do you drive? An analogy would be climbing into a car that hasn't been serviced and is having engine issues. If you then turn it on and jam your foot hard on the accelerator you can cause all sorts of issues, only one of which would be an uncontrolled spinning of the wheels, burning rubber and oil! Sorry if that sounds a bit clumsy. The maximum starting dose is normally 50 mcgs and it should only be increased by 25 mcgs a time to avoid issues. It takes 7-10 days normally to feel any effects and 6 weeks to have the full effect of any dose as the body first stores it and then converts it to the active t3 version. Hence the normal regime of increase dose, wait 6-8 weeks, re-test the blood then increase again if required.

    You didn't become hypo overnight (and many of us have been that way for many, many years before diagnosis) and you won't dramatically improve overnight either. It takes time and patience but you will get there.

    Gillian

  • Welcome to the forum, Adalia.

    Thyroid replacement has to be introduced gradually so 75mcg Levothyroxine is likely to be a starting dose and will probably need to be increased in a few weeks. It is not unusual to feel worse when you first start Levothyroxine but this should pass in 2-3 weeks and you should start feeling improvement as your thyroid levels rise.

    It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the 75mcg dose. Symptoms may lag behind good biochemistry by several months but won't be anywhere near as bad as they feel now.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_...

    For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

    You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

  • Hello Adalia

    As others have mentioned, it will take a while to get you up to correct dose as takes at least six weeks for the dose changes to take full affect so you should be retested soon and your dose increased as necessary until you are at the correct dose. You've likely to have been hypo for some time considering your tsh.

    I believe from my experience, any symptoms from deficiencies (which are common in hypos) often worsen with the onset of thyroid medication so is important to get your Ferritin (iron), Vit B12, Folate and Vit D checked. I always get heart palpitations when my iron is low and am anaemic for example.

    Most autoimmune peeps feel better on a gluten free diet as advised often on here. Considering your daughter's diagnosis of coeliacs and that it runs in the family, have you been fully tested for it? The blood test has been proven to be unreliable and only an endoscopy can fully rule out a coeliac diagnosis. Even so, I have been diagnosed with non-coeliac gluten sensitivity as I test negative for coeliacs but gluten has been proven to trigger my autoimmunity and cause systemic inflammation in my case. Most of my symptoms and diagnosed issues have resolved since going GF apart from my thyroid and a few other niggly issues because too much damage had already been done.

    I know it will be a gradual thing but hope you feel better soon :-)

  • Also, it is advised that all other family members be screened for coeliacs as well if they haven't done already with your other children.

  • Thank you so much for the wonderful, encouraging & informed responses.

    I thought I'd 'reply all' by updating here.

    With regards the Coeliacs (my daughter's), the rest of the family have been tested, yes, & none of us tested positively for the antibodies. However, it is interesting to hear what you say about feeling heaps better without gluten, irrespective of whether there is a proven Coeliacs diagnosis, or even a sensitivity. So thank you for those comments.

    Thought I would let you know that I popped along to the walk-in centre this afternoon, mainly for some reassurance over the headaches, & the first thing that the doctor wants to do is actually re-test just to make absolutely sure there hasn't been a lab error. She was concerned that the hypothyroid diagnosis was so out of the blue - & quite unexpected for me - and that to have shot up from 3.something to 70.51 in a year is an uncharacteristic leap.

    I feel reassured that we are, at least, checking, given how rotten and how much worse off I have felt over this last week. These are the tests requested:

    CRP (GP)

    ESR (GP)

    THYROID PEROXIDASE AB (TPO) GP

    THYROID FUNCTION TEST (GP)

    I think the first two are inflammatory marker tests, which don't currently mean anything to me but which I will look up. The third I understand to be testing for antibodies. And with regards the thyroid function test she assured me they look at T3 as well as T4, though I forgot to ask whether they check RT3.

    Anyway, I am relieved that they are re-testing at this stage.

    I'll let y'all know!

    Thanks again for all the feedback. So helpful.

  • Good luck, I hope it all turns out well for you!

  • Inflammatory markers simply indicate the amount of inflammation in your body - either from illness, autoimmune attacks and in my case gluten which is inflammatory for most. The less inflammation in your body the better you are and the more in control any antibodies are.

    It's unlikely that they will do rt3, they don't often do T3 so good you're getting it done.

    I might be worth getting the other thyroid antibody test as well as the TPO to properly check if it's autoimmune or not as there are two :-)

  • Thank you for that. All further stuff to take on board and look in to as the journey unfolds. I keep learning. And get the impression it will continue ad infinitum! Many thanks.

  • Read to the end ..thankyou ...... Yes, a stressful past ...hit home with me too. I truly believe we are all stressed and must/ want to irradicate as much much as possible asap. I am reducing time with mobile, radio and tv. Being selective with socialising too. I am 70 in January and it has made me re think many things. I teach and study Iyengar yoga and sincerely feel everyone needs calm...from birth to passing. Exhale often, slowly and effortlessly and delete gluten and dairy. I'm also finding NVC (Rosenberg) interesting. Spent my life not asking for my needs to be met. Go for it. Take time for your Self and wishing you a healthy time

    ,

  • Hello everyone; & thanks once again for encouragement, feedback, input, etc.

    My blood results are back (if you remember, my dr suggested stopping meds after I saw her on Sunday & just confirming that everything we are treating is, in fact, accurate!)

    Yes, I am hypothyroid & yes antibodies were present so I assume Hashimoto's is the diagnosis?

    Interestingly, even just a week's worth of Levo at initial dose of 50mcg & up to 75mcg had improved my TSH levels already, which had fallen from 70.51 to 43.28 even in that time; & T4 had gone up from 5.7 to 8.9, so I guess I should be encouraged that my body was responding appropriately, even if I was feeling a bit rough!!

    Doc has suggested restarting meds at a dose of 100mcg & not bothering with subclinical doses at this stage, given that I was not feeling good on them. So we will see. Worth a try.

    I guess the fact I had tonsillitis last week (whether connected or not) can't have helped with the way I have been feeling generally, adding to the over all sense of malaise & 'unwellness'! A bit virusy - or something.

    Also, pleased to report that the inflammatory marker tests were all nicely within range. That's a relief! It's amazing how the mind wanders when you just know something is 'up'!

    Anyhow, if you don't mind, I will list my current blood results (& lab ranges) here now for your interpretation and input going forward, especially in terms of what I should be aiming for:

    TSH: 43.28 (0.27-4.20)

    T4: 8.9 (12.00-22.00)

    PEROXIDASE AB: 60.48 (0.00-34.00)

    In terms of additional info. that some of you have said it would be worth checking, my doctor has ordered my Vit. D and folate to be tested at my next round of bloods. For now, I do have my ferritin and B12, which are within the normal ranges:

    Ferritin: 27 (13.00-150.00)

    B12: 354 (197.00-771.00)

    It strikes me that, although my ferritin falls within the normal range, it is at the lower end of normal and could probably do with a boost. Would you agree? Also, my haemoglobin estimation is right at the lower end of 'normal', at 116 (115.00-155.00), so I am also thinking that perhaps I should take responsibility for strong my iron up. What bemuses me is that I do not have an iron-deficient diet. I eat red meat, pulses, leafy vegetables etc. - so I do wonder why I have (all my life) had a tendency towards low iron levels. Any thoughts on this and on absorption issues etc.?

    Should I supplement?

    I have today bought a Selenium supplement, called Selenium Plus (by HealthAid), with vits A, C, E & Zinc. Selenium content is 200mcg, Zinc 4mg, Vit C 120mg, Vit E 67mg, Vit A 750mcg. Hopefully that will be a help? I will await results of Vit D and folate before supplementing, though I have heard that we could all do with Vit D anyway!

    Anything I am missing?

    For your info (I don't know what helps!) I am a 33 year old female, my height and weight are okay (180cm & 73kg), though my cholesterol has come back a little high, at 5.1 (2.30-4.90) & HDL cholesterol 2.8 (1.20-1.70).

    Anything else that you think would help you to help me or me to help myself, then do please let me know!

    Unfortunately I was wrong about my doctor testing T3. Shall I see how I go on 100mcg Levo for a few weeks and hope for the best? Then can go from there in terms of further tests if I am not responding positively?

    Thank you so much, as ever. What a great forum for advice, support and encouragement. Thank you for sharing your experiences and experience!

  • And by saying "my height and weight are okay" what I meant was in terms of BMI etc. and an idea as to doses appropriate to my size and weight!! Ha!

You may also like...